tag:blogger.com,1999:blog-48310708562580146562024-03-05T21:55:22.209+00:00SMASH SMAA blog about the SMASHSMA campaign to raise awareness of Spinal Muscular Atrophy the number one genetic killer of children under 2. In memory of Estella who died in November 2011Unknownnoreply@blogger.comBlogger52125tag:blogger.com,1999:blog-4831070856258014656.post-80763650146142923412013-08-08T09:50:00.000+01:002013-08-08T10:03:00.158+01:00HEROESIt's been awhile<br />
<br />
Three things happened during the last week that have occasioned this blog.<br />
<br />
Firstly we were in Seville for a break and had gone to Estella's fountain. We bought her her usual present and put it in the water. It was a water pistol because I imagine she's rather cheeky by now and I had a trial shooting water at her Mummy to amuse her. As we left Maria asked why I had not taken photos this time for Twitter and I said it did not feel right. She was happy and said that it was a sign that she was becoming our daughter again and not a symbol for a campaign.<br />
<br />
Secondly we heard from the organisation that are doing the consultation into screening for SMA that we had been fighting for. They apologised for overlooking us in the consultation process and suggested that they would extend the consultation by two months. All I could think was that would be another two month delay until the outcomes were realised and I also decided that i think I have said all I want to say.<br />
<br />
Thirdly - It is SMA awareness month. I found this out from my own twitter account on August 7th. It was then that I realised I was no longer paying the attention that was needed to an account with 44,000 followers. I simply couldn't find the 2-3 hours a day I used to find.<br />
<br />
All of this sounds as though I am ending the SMASHSMA campaign.<br />
<br />
I'm not.<br />
<br />
I intend to raise funds when I can. I intend to spread awareness, I will be there instantly if any parents ever needs help or support, I intend to carry on raising the matter with the government but I feel sure you can see I have not been around as much lately and wanted to explain that the moments we are sharing with Cristina are absolute heaven and I would be wrong to use my energy fighting SMA each and every day. I need to be a lot more focused. Cristina is bringing so much joy and yet it is tinged with sadness. I watch her now starting to crawl and laughing and holding her own spoon and I realise more than ever how poorly Estella was. I see what was going on in her head and it makes me cry. It strips me down to the same raw feeling that we had when Estella died.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJuZGkpHgqlZFH9QYGjhSviN8htMZ8CSnlbG6kmZ8SSw2jH73m16yUho0sFsLPz_uhNAXQC-9dXYfZC_Yaz47essZrixBnvtHa-u6Ne9oRKZZj0C_4Yk0Ke3YGvZ75CzdG2zjNo_9O/s1600/IMG_0269.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJuZGkpHgqlZFH9QYGjhSviN8htMZ8CSnlbG6kmZ8SSw2jH73m16yUho0sFsLPz_uhNAXQC-9dXYfZC_Yaz47essZrixBnvtHa-u6Ne9oRKZZj0C_4Yk0Ke3YGvZ75CzdG2zjNo_9O/s1600/IMG_0269.JPG" height="239" width="320" /></a></div>
<br />
<br />
I promised Esetlla that I would do all I could to rid the world of this terrible disease and I'm not giving up on that but I am saying that there will not be 50 tweets a day anymore.<br />
<br />
It's more than a matter of time though<br />
<br />
I have called this blog Heroes - because of the people we have met along the way. The individuals and organisations who have done so much to spread the SMA awareness story. I'm not going to start listing because I will miss somebody out and I would hate to do that. We have met some exceptional people and had extraordinary support. We have had one organisation ( Morrison Facility Services) that have spent a fortune - we have had individuals who have tweeted all night every night for month after month, we have had some medical support while Estella was alive from people who loved her and became friends.<br />
<br />
There have been low points. The cynical politician who tried to hijack the story, the celebrity who disappeared and some amazing behaviour from the charities that are supposed to be fighting this disease. It would be churlish to go into detail but if I have had one single life-changing experience it has been with the incompetence demonstrated by a major SMA support charity. I genuinely believe that it is not from lack of money that SMA is not cured yet but from a lack of direction , intelligence, innovation and desire from some of the most unprofessional morons it has ever been my displeasure to speak with. They know who they are.<br />
Time wasters - money wasters - life wasters. Shameless<br />
<br />
Let's not end this blog with that bitterness that i feel towards some of the organisations.<br />
<br />
It's called HEROES for a reason.<br />
<br />
Let's end with an abiding thought of the sweet, dear little girl that this is all about. Our Estella was an exceptional person by any standard. She lived a short and meaningful life and she made a difference to so many people. She inspired, she entertained and she shone like an absolute burning star.<br />
<br />
I miss her every day. I think of her constantly and I would give my heart and soul for another ten minutes with her. She never ran, she never sang, she never stood and played with a ball - but she is in my heart and my mind and my life. She was born with the cruellest , most wicked , disease it is possible to imagine and yet she smiled and brought so much happiness into our lives.<br />
<br />
Estella means star.<br />
<br />
There are so many stars in the sky. There are children everyday who are dying from this disease. I will continue to do what I can - but - it's not my life anymore, it's not my reason for being anymore - remembering Estella and loving my time with Cristina and Maria is my life now. They're my three girls. They're my life - and SMA is a dirty , nasty - naughty little disease. If we can make something of this life and find happiness then Estella beat SMA. If we can be happy then that little heroic girl did something that I could not.<br />
<br />
She smashed SMA<br />
<br />
<br />
Thankyou for listening<br />
<br />
<br />
And for all your kindness to my family<br />
<br />
May you always be happy.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPJD7pO9IkJzO1NdK2Jp78QQOS9GwyH_Mi7YnJL91vVjFNC8EasONTVXJScdx_SuCpXLLULIkOPINzgcq5uo8rX1pRJJIS6xS4v1D0uebUzSXgWkY5UKr-BfGjHhWSbnK0iTlLhIIn/s1600/IMG_0349.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPJD7pO9IkJzO1NdK2Jp78QQOS9GwyH_Mi7YnJL91vVjFNC8EasONTVXJScdx_SuCpXLLULIkOPINzgcq5uo8rX1pRJJIS6xS4v1D0uebUzSXgWkY5UKr-BfGjHhWSbnK0iTlLhIIn/s1600/IMG_0349.JPG" height="240" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh41JXMfrRqVWp2qwmP_reef1LMpasr6EZlj5F0lxbOjf9SCeVJwKIo5zwOmOhFGpkMQpm7Ym4K1JUlL2GLO48Po9iQHc9uxA18HcBofu2FDDDaYM-CsRuBLe6RIk_Et_QIYJDYyCrk/s1600/IMG_0200.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh41JXMfrRqVWp2qwmP_reef1LMpasr6EZlj5F0lxbOjf9SCeVJwKIo5zwOmOhFGpkMQpm7Ym4K1JUlL2GLO48Po9iQHc9uxA18HcBofu2FDDDaYM-CsRuBLe6RIk_Et_QIYJDYyCrk/s1600/IMG_0200.JPG" height="239" width="320" /></a></div>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4831070856258014656.post-10777617555848004862013-07-08T09:54:00.001+01:002013-07-08T09:54:14.182+01:00SMA - THE CONSULTATION <div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;"></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;"><strong>Had the following through from Edd Hair </strong></span></div>
<div class="MsoNormal" style="margin-bottom: 3pt;">
<i><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 10pt;"><strong>Assistant Private Secretary, Minister of State for Care and Support</strong></span></i></div>
<div class="MsoNormal" style="margin-bottom: 3pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 3pt;">
<i><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 10pt;"><strong>This is the follow through to the meeting we had with The Minister and the Deputy PM last year.</strong></span></i></div>
<div class="MsoNormal" style="margin-bottom: 3pt;">
<i><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 10pt;"><strong>I hope that some of you find time to give response to teh consultation. </strong></span></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">Tom</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">Further to my email below, the minister asked me to keep a watching brief on policy relating to spinal muscular atrophy, and to write back to you when I had something helpful to pass on. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">First of all, I wanted to make sure you were aware that the UK National Screening Committee’s (UKNSC’s) consultation on screening for SMA was now underway. The review of screening policy for SMA is taking place from May 2013 to May 2014, and the UKNSC are seeking views by email until 5 August. Further details are available on their website, and I would encourage you and your supporters to write in with your views:</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;"><a href="http://www.screening.nhs.uk/sma" title="http://www.screening.nhs.uk/sma">http://www.screening.nhs.uk/sma</a></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">I know one of the other areas of focus for your campaign was funding for research. In particular, you mentioned the work of Professor Gillingwater's research team at the University of Edinburgh. The overall focus of their research is on cellular and molecular mechanisms that regulate the form and function of the nervous system in health and disease. The UK Research Councils are the appropriate public funders of this type of research, and the research team's webpages acknowledge funding support from the Biotechnology and Biological Sciences Research Council.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">The Department of Health funds applied health research in England through the National Institute for Health Research (NIHR). The NIHR biomedical research centre at Great Ormond Street Hospital and the Institute of Child Health has carried out research on spinal muscular atrophy. Applied health research in Scotland is funded by the Chief Scientific Office.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">I’m sure you / Professor Gillingwater will have already pursued a number of funding opportunities, but in case not, here are further details of the funding opportunities provided by relevant organisations:</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;"><a href="http://www.bbsrc.ac.uk/funding/apply/apply-index.aspx" title="http://www.bbsrc.ac.uk/funding/apply/apply-index.aspx">http://www.bbsrc.ac.uk/funding/apply/apply-index.aspx</a></span></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;"><a href="http://www.mrc.ac.uk/Fundingopportunities/index.htm" title="http://www.mrc.ac.uk/Fundingopportunities/index.htm">http://www.mrc.ac.uk/Fundingopportunities/index.htm</a></span></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;"><a href="http://www.nihr.ac.uk/proposals/Pages/default.aspx" title="http://www.nihr.ac.uk/proposals/Pages/default.aspx">http://www.nihr.ac.uk/proposals/Pages/default.aspx</a></span></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;"><a href="http://www.cso.scot.nhs.uk/ApplyingForFunding/ApplyIntro.htm" title="http://www.cso.scot.nhs.uk/ApplyingForFunding/ApplyIntro.htm">http://www.cso.scot.nhs.uk/ApplyingForFunding/ApplyIntro.htm</a></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">These organisations are independent and do not ring-fence funding for particular projects, however all organisations consider applications in open competition, with awards being made on the basis of the scientific quality of the proposals made. Decisions are taken independently, according to the long-established ‘Haldane principle’. If Professor Gillingwater has not already done so, I would certainly encourage applications to these various funding sources. I’m sure the minister would want me to pass on his apologies that he can’t be more directly helpful with influencing funding bodies – which I know was the central point of your email below - but I’m sure you will appreciate the importance funding decisions being made on merit and without the interference of ministers. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">You might also be interested to know that the National Institute for Health and Care Excellence (NICE) has been asked to develop a clinical guideline on neurological problems. The guideline will provide the underpinning source of evidence for a quality standard on the same topic. (Both documents effectively set out what good care looks like, and are used by CCGs to inform the services they commission). </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">The exact scope of the guidance, including which conditions will and will not be covered, will be determined by NICE through consultation with stakeholders, but you may wish to keep abreast of work on this topic as it develops. Once NICE initiates work on this guidance, further information will be available on NICE's website at <a href="http://www.nice.org.uk/guidance/CG/InDevelopment" title="http://www.nice.org.uk/guidance/CG/InDevelopment">http://www.nice.org.uk/guidance/CG/InDevelopment</a>. You can see ‘neurological problems’ on the list of guidelines referred on this page: <a href="http://www.nice.org.uk/guidance/cg/indevelopment/GuidelineReferralsUnderpinStandards.jsp" title="http://www.nice.org.uk/guidance/cg/indevelopment/GuidelineReferralsUnderpinStandards.jsp">http://www.nice.org.uk/guidance/cg/indevelopment/GuidelineReferralsUnderpinStandards.jsp</a> and may want to write to NICE to seek further confirmation for exactly when they intend to develop this guidance further, and to ask that you are engaged / can become involved at that stage. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">Finally, you may be aware that NHS England took on their formal responsibilities as of 1<sup>st</sup> April this year. This means that, in effect, NHS England is responsible for determining clinical policy (including policy on the diagnosis and treatment of spinal muscular atrophy). The government sets out a high level ‘Mandate’ to NHS England which sets out strategic priorities on a general level (including ‘domain two’ which focuses on long term conditions); and it is for NHS England to determine how to deliver against the objectives set out in the Mandate.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">You can view the Mandate here: <a href="http://mandate.dh.gov.uk/" title="http://mandate.dh.gov.uk/">http://mandate.dh.gov.uk/</a> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">You might also wish to write to NHS England for more information on their intentions around clinical policy in this area. The relevant contact would probably be David Bateman, who is the National Clinical Director for acute and chronic neurological disabilities. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">I hope the above is of interest, and apologise for not having been in touch sooner. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">Yours faithfully,</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">Edd</span></div>
<div class="MsoNormal">
<br /></div>
<div>
<table border="0" cellpadding="0" cellspacing="0" class="MsoNormalTable" style="border-collapse: collapse;"><tbody>
<tr style="height: 63.8pt;"><td style="border-bottom: windowtext 1pt solid; border-left: medium none; border-right: medium none; border-top: medium none; height: 63.8pt; padding-bottom: 0cm; padding-left: 1.4pt; padding-right: 1.4pt; padding-top: 0cm; width: 136.55pt;" valign="top" width="182"><div class="MsoNormal">
<br /></div>
</td><td style="border-bottom: windowtext 1pt solid; border-left: medium none; border-right: medium none; border-top: medium none; height: 63.8pt; padding-bottom: 0cm; padding-left: 1.4pt; padding-right: 1.4pt; padding-top: 0cm; width: 312.85pt;" valign="top" width="417"><div class="MsoNormal" style="margin-bottom: 6pt; margin-left: 0cm; margin-right: 0cm;">
<b><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 10pt;">Edmund Hair</span></b><b><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 10pt;"></span></b></div>
<div class="MsoNormal" style="margin-bottom: 3pt;">
<i><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 10pt;">Assistant Private Secretary, Minister of State for Care and Support</span></i><i><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;"></span></i></div>
<div class="MsoNormal">
<span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 10pt;">Department of Health, 79 Whitehall, SW1A 2NS</span><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;"></span></div>
<div class="MsoNormal">
<span lang="FR" style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 10pt;">E: </span><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 10pt;"><a href="mailto:edmund.hair@dh.gsi.gov.uk" title="mailto:edmund.hair@dh.gsi.gov.uk"><span lang="FR" title="mailto:edmund.hair@dh.gsi.gov.uk">edmund.hair@dh.gsi.gov.uk</span></a></span><span lang="FR" style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 10pt;"> | T: 0207 210 5549</span><span lang="FR" style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;"></span></div>
<div class="MsoNormal">
<br /></div>
</td></tr>
</tbody></table>
</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4831070856258014656.post-50824635041504616372013-06-08T17:35:00.001+01:002013-06-08T17:35:20.805+01:00LET LIAM LIVE - AN UPDATEWe have had two replies from Liam's Dad both of which show what a humble and intelligent person he is. In the first one he is keen to say that they do not wish to attack ISIS pharmaceuticals but would rather try persuasion. We have made some suggestions.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmpDuA8IqbMnvHzvHKjnYfrQWepLenb3PMLii53FZTpEmggKUgjjnBznkkaQePDg1OKAKwXkXoW4Q7TG-D4TToHNj22bfWiVAUetn6CAKhjN1cucDHeL1xNLnUXo0BrVYHSG05QyHs/s1600/6c000e8e5e3b4d7fd308a817874abed7.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmpDuA8IqbMnvHzvHKjnYfrQWepLenb3PMLii53FZTpEmggKUgjjnBznkkaQePDg1OKAKwXkXoW4Q7TG-D4TToHNj22bfWiVAUetn6CAKhjN1cucDHeL1xNLnUXo0BrVYHSG05QyHs/s320/6c000e8e5e3b4d7fd308a817874abed7.jpg" width="211" /></a></div>
<br />
<br />
In the second he replied as follows<br />
<br />
<strong>Hi there, </strong><br />
<div>
<span style="color: #333333; font-family: "Helvetica Neue",Arial,sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;"><strong>Thank you for your support, your encouragement given us a great ideas, I think, we now have a plan to make something big.</strong></span></div>
<div>
<span style="color: #333333; font-family: "Helvetica Neue",Arial,sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;"><strong>Obviously we will work quickly, because each day count in the SMA. In waiting if I understand we need to put into our communications the #smashsma , <br />#letliamlive and the link to your blog?<br />Give us a few days and the Canadians will be to the appointment:-)</strong> </span></div>
<div>
<span style="color: #333333; font-family: "Helvetica Neue",Arial,sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;"></span> </div>
<div>
<span style="color: #333333; font-family: "Helvetica Neue",Arial,sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">I replied with</span></div>
<div>
<span style="color: #333333; font-family: "Helvetica Neue",Arial,sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;"></span> </div>
<div>
<span style="color: #333333; font-family: "Helvetica Neue",Arial,sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;"></span> </div>
<div>
Excellent. You can use any of our information. You can use #smashsma #letliamlive or our blog if it helps. I will write to or speak to anybody you suggest. I will do every single thing I possibly can to help you. It is essential that your son is given a chance. You have my 100% commitment to your cause. I have contacted a friend in the American Embassy. I think you are right it is proper to be polite with ISIS but they will listen better when you and that lovely boy are on television. Take care and - I hope this sounds proper - despite all of these things enjoy every moment with your little fella because these are special days that will not come again. You know that I am sure but I wanted to say it. </div>
<div>
</div>
<div>
Tom </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4831070856258014656.post-51391635565118662482013-06-07T18:13:00.001+01:002013-06-07T19:33:30.544+01:00CAN WE SAVE THIS LIFE ?<br />
THERE IS AN 8 MONTH OLD BOY AND HE NEEDS YOU- PLEASE READ<br />
<br />
<br />
You may have seen an article about a little boy called Liam who is 8 months old and has SMA. The trials that we have been fighting for are STARTING in Canada and SMA type 1 babies are being given a chance to live - apart from Liam because he is 17 days too old to qualify for the trial. You may have heard this story - well today we received a direct appeal from Liam's parents asking if there is anything we can do.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_igkPYLkhpFG2oh34j0iV-qDMHjdg8lXx_o3v4VD1lFGOf8NKUgg7Q8VZ0qF9IJ_Tu0X4vcwAmSMnRTjeKX3E8ATzMepchCQTcwubVIDwt7gHG02C4hDAnzjcbXpE8rTHtf0MJuX-/s1600/20130604-150104-g.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_igkPYLkhpFG2oh34j0iV-qDMHjdg8lXx_o3v4VD1lFGOf8NKUgg7Q8VZ0qF9IJ_Tu0X4vcwAmSMnRTjeKX3E8ATzMepchCQTcwubVIDwt7gHG02C4hDAnzjcbXpE8rTHtf0MJuX-/s1600/20130604-150104-g.jpg" height="179" width="320" /></a></div>
<br />
<br />
<br />
<br />
Please can I ask you to make a fuss about this - let's make a noise all over TWITTER. The hash tag will be #letliamlive LET LIAM LIVE. Even if he is outside the age for the trial he should be allowed the drug and the results should then not be included in the study. There are not thousand's of these babies there is this one little lad and they are going to let him have no chance of regeneration because he is 17 days too old. <br />
<br />
This is barbaric.<br />
<br />
Here's the story<br />
<br />
<br />
<br />
<br />
<a href="http://www.cjad.com/CJADLocalNews/entry.aspx?BlogEntryID=10552925">LET LIAM LIVE</a><br />
<br />
<br />
MONTREAL - An infant who's slowly dying of a rare spinal defect has been denied an experimental medical treatment because he's 17 days too old.<br />
The cutoff set by the U.S. pharmaceutical firm ISIS has outraged his parents, Yan Defosses and Emanuelle Desbiens.<br />
"It's cruel and completely inhuman," Defosses told QMI Agency.<br />
Eight-month-old Liam suffers from spinal muscular atrophy, a genetic disease that attacks the <nobr><a class="FAtxtL" href="http://www.sunnewsnetwork.ca/sunnews/sciencetech/archives/2013/06/20130604-150104.html#" id="FALINK_2_0_1">spinal cord</a></nobr>, weakening his muscles.<br />
His parents realized something was wrong soon after his birth. He was losing muscle tone instead of gaining it.<br />
When he was four months old, doctors gave his parents the diagnosis and said the baby only had two years to live.<br />
He's already showing <nobr><a class="FAtxtL" href="http://www.sunnewsnetwork.ca/sunnews/sciencetech/archives/2013/06/20130604-150104.html#" id="FALINK_1_0_0">symptoms</a></nobr> of the disorder. He can't lift his head without help and has difficulty breathing.<br />
But the family's hopes were kindled when they learned that California-based ISIS has conducted clinical trials on the drug SMNRx.<br />
"We are in contact with families in the United States, and it has completely changed the lives of their children," said Defosses. "They've survived under more than acceptable conditions."<br />
Earlier this spring, the company announced a second phase of clinical trials, this time in babies. But the children had to be seven months old or less before May 1. Liam was seven months and 17 days old.<br />
Liam's doctors said they could do nothing because the trials aren't being conducted in Canada.<br />
Saint-Justine Hospital and Health Canada were prepared to approve Liam's treatment but ISIS refused.<br />
"It shocked us and destroyed us," said Defosses.<br />
<br />
<br />
<br />
Below is the heart-breaking plea from his Dad<br />
<br />
Please tweet about this - let's start the ball rolling <br />
<br />
Please tweet ISIS - Please allow Liam to be included in your SMA study. Please let hum live #letliamlive<br />
<br />
<br />
<br />
-------- Original Message --------<br />
Subject: Message via votre profil Google : We need your help<br />
From: Yan Défossés <<a href="mailto:yan@groupeinfiny.com" target="_blank">yan@groupeinfiny.com</a>><br />
To: <a href="mailto:estellameansstar@gmail.com" target="_blank">estellameansstar@gmail.com</a><br />
CC: <br />
<br />
Greeting to you,, my name is Yan I'm the father of a child who are diagnosed with sma type 1. I write to you from Montréal Canada, like you probably know Isis pharmaceutical begin a clinical trial on infant with her compound the SMNRX. Our son Liam meet all the criterias for this study, unfortunately the canadian centre is not yet rolling and my son just turn 8 months. So he is now too hold for the study. <br />
<br />
Because we know how it's important to restore as soon as possible the smn protein level, that few weeks, can make all the difference to restore motor function of our child, we continued our research, to avoid delaying access to the experimental treatment. After describing the context and give all the information we have about Isis and SMNRX, to Health Canada, equivalent of the FDA in U.S. we obtain a special authorization granted by Health Canada allowing Isis to provide the drug out off protocol and releasing any liability. With that way, Isis can receive more data and is not obliged to diffuse or account the result in the actual study. <br />
<br />
Obviously, there is no obligation for Isis, to accept. And there is the point, she refuse:-( I understand you make some pressure last year to stress Pfizer to invest in the SMA and it seems that it work with her engagement in the RG3039 and Repligen. Could you give us advice to encourage them to change their minds quickly, before the therapeutic window of our little boy has passed? Thank in advance The Desbiens-Défossés family tel: <a href="tel:1.514.583.1247" target="_blank" value="+15145831247">1.514.583.1247</a> Thank you so much again for all you do for the SMA and sorry for the strange writing we usually speak french at home Yan<br />
<br />
<br />
<br />
I have replied<br />
<br />
<div>
<strong><span style="font-size: large;">Yan</span></strong></div>
<div>
<strong><span style="font-size: large;"> </span></strong></div>
<div>
<strong><span style="font-size: large;">I was devastated to read your story. Our little girl died aged 8 months from the same disease and we have been working since then to get drug trials and now we are told that ISIS say no to your case. The argument you put forward is fair and reasonable and should appeal to rational and caring hearts,</span></strong></div>
<div>
<strong><span style="font-size: large;"> </span></strong></div>
<div>
<strong><span style="font-size: large;">BUT</span></strong></div>
<div>
<strong><span style="font-size: large;"> </span></strong></div>
<div>
<strong><span style="font-size: large;">What you need now is to make a noise</span></strong></div>
<div>
<strong><span style="font-size: large;"> </span></strong></div>
<div>
<strong><span style="font-size: large;">1) We have asked 44,000 twitter followers to tweet their protest at ISIS and we are using the message LET LIAM LIVE #letliamlive</span></strong></div>
<div>
<strong><span style="font-size: large;">2) We will do the same of FACEBOOK</span></strong></div>
<div>
<strong><span style="font-size: large;">3) Messages are being left for you on our blog at www.smashsma.blogspot.com</span></strong></div>
<div>
<strong><span style="font-size: large;"> </span></strong></div>
<div>
<strong><span style="font-size: large;">BUT</span></strong></div>
<div>
<strong><span style="font-size: large;"> </span></strong></div>
<div>
<strong><span style="font-size: large;">You are in Canada. Get the local TV station. Get the local newspaper. Get the local radio. Go and sit in the lounge at the TV station until they will hear you and put you on TV. this is a heart-breaking story and they will give you publicity - publicity enough to SHAME ISIS into acting. You need to tell then that thousands of people in the UK are backing you and you need the people of Canada. Liam needs the Repligen and he needs it now. If the facts are not included in the overall trial so what it is a moral and kind act - it is a human act to give the boy the help he needs. </span></strong></div>
<div>
<strong><span style="font-size: large;"> </span></strong></div>
<div>
<strong><span style="font-size: large;">If ISIS will not listen then get your friends and your family to sit in their reception until the TV cameras turn up. You are fighting for the quality of life of your treasure and you must do everything you can. It is not enough for them to use lame arguments about access to the drug. there are not hundreds of babies with the condition so the argument that they have to draw the line somewhere is NOT ACCEPTABLE. I will do anything at all to help from this end. Do you have a TWITTER account ? Please let me know. We are with you - we are praying that sanity sees its way through. Please let us know what happens. please send more photos of Liam to help me spread the word at this end. I lost my little girl and we swore to her that we would SMASHSMA - well she would love it if this became a very concrete example of her legacy. the people here are amazing and they will be writing to you and giving their hearts. </span></strong></div>
<div>
<strong><span style="font-size: large;"> </span></strong></div>
<div>
<strong><span style="font-size: large;">Be strong. Fight </span></strong><br />
<strong><span style="font-size: large;"></span></strong><br />
<strong><span style="font-size: large;"></span></strong><br />
<br />
<span style="font-size: large;"><a class="profileName" href="http://www.facebook.com/emmanuelle.desbiens.3" target="_blank"><span style="font-size: small;">Emmanuelle Desbiens</span></a><span class="fsm fwn fcg"><span style="font-size: small;"> · </span><a class="uiLinkSubtle" href="http://www.facebook.com/pages/Polyvalente-de-L%C3%A9vis/115093375170439" target="_blank"><span style="font-size: small;">Polyvalente de Lévis</span></a></span><br />
<div class="postContent fsm fwn fcg">
<div class="postText">
<strong>We are the Liam's parents and we would like to clarify, that although it may seem cruel, we understand and respect the position of the pharmaceutical to strictly follow the eligibility criteria of their study. Our sadness is that Isis refuses to grant the three experimental doses despite a special authorization granted by Health Canada, the equivalent of compassion access the FDA in the United States. The authorization provided by the Special Access Programme to drug released from all responsibilities this pharmaceutical. Isis could collect additional data without creating noise in the current study. We follow the developpement of this compound and be confident its the good for our child. In addition, if you know this disease (SMA TYPE1) you know that now is the time or never to help.</strong></div>
</div>
</span><strong><span style="font-size: large;"></span></strong><br />
<strong><span style="font-size: large;"></span></strong> </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4831070856258014656.post-21591788958128191982013-05-31T18:43:00.002+01:002013-05-31T18:43:58.303+01:00NICE TO SEE YOU<span style="font-size: large;">The care and attention and support that we have had since Estella's death in November 2011 has been well chronicled in these pages. There have been some celebrities, some institutions , but most of all there have been some fantastic people who could not have been closer if they were family. They listened while we cried , they listened while we raged and they listened while we remembered. Exceptional - amazing people. You know perfectly well if it is you that I am talking about. Do not be modest - you know.</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">We always said that it would be terrific if one day we could meet up with some of our strongest ( and maybe strangest ) supporters. Some came to London with us to lobby Nick Clegg. Others have visited us around the country but there are far more of you that I want to say thankyou to in person.</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">As you are probably aware we recently decided to hold a SMASHSMA fundraising evening. The theme was unusual - we wanted to reproduce a 1950s Beat Generation 'Happening' - complete with bearded poets and musicians. Think MADMEN during the first season and you won't go far wrong. </span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">So after lots of organisation we are holding a full weekend of retro 50s and 60s entertainment at the New York Stadium in Rotherham - South Yorkshire. The theme is based around the Beat Generation writer Jack Kerouac who wrote the famous novel - On The Road.</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">What's that got to do with SMA ? Nothing - and that's the point. The novel, On the Road, and the philosophy of the Beats was to live life in the moment. to celebrate , to love, to dance and to enjoy every moment - and that's what we think of when we think of Estella. a little girl who made the most out of every ounce of life that was given her - and although that wasn't much in terms of time - it was so much in terms of quality and the impact she has left behind.</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">So </span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">We want YOU to come and meet Maria and myself and Cristina at the event. We want to thank YOU personally for all you have done and the love and support you have shown. Even if you have never heard of Kerouac then I can still promise you a Saturday experience you will never forget. We have a band Heath Common and the Thin Man who will really get you going, We have a play that I wrote with my mate Brian called Beat Surrender and we have an evening of song, poetry, dance and craziness that will be unlike anything you have ever seen as you are transported back in time to 1957 and a retro night to remember. If you come to both days there are panels and discussions and films about the beats on the Sunday.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrLXkb0iWSv_pAG65hmHbHyPfAi1Unpwj39cdkD4zxLNRmWYmiMJ4mEniFnlke207qGG2vGylHTNibzQe-ChPBa7jCyrdWjWrp4_oCqiTE4R6zfu-sQ8-Z6-f6p4IS-QKhdV-Ao2at/s1600/IMG_0534.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrLXkb0iWSv_pAG65hmHbHyPfAi1Unpwj39cdkD4zxLNRmWYmiMJ4mEniFnlke207qGG2vGylHTNibzQe-ChPBa7jCyrdWjWrp4_oCqiTE4R6zfu-sQ8-Z6-f6p4IS-QKhdV-Ao2at/s1600/IMG_0534.JPG" height="240" width="320" /></a></div>
<span style="font-size: large;"></span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">Every penny of profit ( please God ) is going to Professor Gillingwater's SMASHSMA research fund.</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">More importantly though we would love to meet you and thankyou. there will be a film about Estella and the chance to help spread the word about SMA with us. Please come and say hello.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY3EsWlPrGZmmbDcBSN2D4msHi533Z9iV97TFPbGMFGczKn0Cgu47uALpFO13CHnbXbIf3HNxzYZ-uAxZX6DxjzzTVh02C_NT-SYbcActXvYlSJXtTPsdVXv59j96mfKkitFuLa0ZM/s1600/6850899937_fcdeb4a231_z.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY3EsWlPrGZmmbDcBSN2D4msHi533Z9iV97TFPbGMFGczKn0Cgu47uALpFO13CHnbXbIf3HNxzYZ-uAxZX6DxjzzTVh02C_NT-SYbcActXvYlSJXtTPsdVXv59j96mfKkitFuLa0ZM/s1600/6850899937_fcdeb4a231_z.jpg" height="320" width="227" /></a></div>
<span style="font-size: large;"></span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">HOW YOU CAN HELP</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">1) Go and follow the show on TWITTER now @kerouacbeats</span><br />
<span style="font-size: large;">2) Full details of the weekend are on <a href="http://www.kerouacbeats.blogspot.com/">www.kerouacbeats.blogspot.com</a> PLEASE LOOK</span><br />
<span style="font-size: large;">3) The full weekend costs £ 25 but that includes 18 hours of entertainment / free parking / a cuddle with Cristina - and all goes to SMASHSMA</span><br />
<span style="font-size: large;">4) Or just come to the Saturday or Sunday at £ 15 per day. I would rather you were there on the Saturday night so you can get a little pisse@@@ drunk and buy things in the SMA auction.</span><br />
<span style="font-size: large;">5) It would be amazing for us to meet you but also for you to meet up with people you have been tweeting with for nearly two years now. </span><br />
<span style="font-size: large;">6) 6th and 7th JULY - NEW YORK STADIUM / ROTHERHAM</span><br />
<span style="font-size: large;">You can buy tickets NOW at</span><br />
<span style="font-size: large;"></span><br />
<a href="http://www.rotherham.gov.uk/theatres/events/start/07-07-2013/end/07-07-2013&month=07&year=2013">BUY TICKETS NOW - PLEASE</a><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">Please come along and say hello - we want to meet you. If you can't make it why not just buy a ticket anyway and consider it a nice mad act to support SMASHSMA </span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">See you there xxx</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEillez07pa8bhC9idr1rqMcAf-3dDRJp6AIzFkgd5ulsSZoynTKtL4cV7qS1kfJp62A7dHybqJz0g5QAd2OmiDSt6WSuXH7O6bmwNh-t6nasJwGHCF7HkdsUM-HQ3jb-6DrXVNilHBN/s1600/IMG_0713.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEillez07pa8bhC9idr1rqMcAf-3dDRJp6AIzFkgd5ulsSZoynTKtL4cV7qS1kfJp62A7dHybqJz0g5QAd2OmiDSt6WSuXH7O6bmwNh-t6nasJwGHCF7HkdsUM-HQ3jb-6DrXVNilHBN/s1600/IMG_0713.JPG" height="320" width="213" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs_tjM2uQxrVKapwjqrA8uHWBrqcm7ecYI3g6r0UOgAdzqLYPPc1eMp7mhjZBS-s0kjddnhEOt7l23PQoKzFNnaNAtu6cH_h5woot_jX8NcFY7ANFYmr8VxX-PrOFrzi2Bh60irICz/s1600/IMG_1461.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs_tjM2uQxrVKapwjqrA8uHWBrqcm7ecYI3g6r0UOgAdzqLYPPc1eMp7mhjZBS-s0kjddnhEOt7l23PQoKzFNnaNAtu6cH_h5woot_jX8NcFY7ANFYmr8VxX-PrOFrzi2Bh60irICz/s1600/IMG_1461.JPG" height="186" width="320" /></a></div>
<br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;"></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4831070856258014656.post-16275287799249036322013-04-18T09:39:00.001+01:002013-04-18T09:39:24.561+01:00CHANGESI don't know if you have noticed but we are losing a lot of followers from the Twitter account. Overall the number is increasing but there can be days when we lose over 100 followers as we gain new ones. For a while this upset me then I had a Direct Message from one of our followers who explained that they were leaving now because they 'were not needed any more.'<br />
<br />
Then I got it.<br />
<br />
There were people thinking that since the birth of Cristina on 20th February we no longer needed help with grieving - we were posting pictures of her and sounding far happier and people were thinking that it was time to go.<br />
<br />
They are right in one way. I have certainly been tweeting far less and Maria and I could not be happier with our new life. Cristina is not only healthy, she is beautiful, bright and highly entertaining.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh62AUgwIsDWi185DPfFkveTPBfYS44U8jn8nvjr2zw96QnQ9psEymcX1s0SKwM6sp2MkPmqTHSeSC6GjM0HMbjm-FiHGxfgKuRXQeFcog2XUtMA5VnFL88o0DZ3Q8oqdapeFEfEEBV/s1600/IMG_0144.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh62AUgwIsDWi185DPfFkveTPBfYS44U8jn8nvjr2zw96QnQ9psEymcX1s0SKwM6sp2MkPmqTHSeSC6GjM0HMbjm-FiHGxfgKuRXQeFcog2XUtMA5VnFL88o0DZ3Q8oqdapeFEfEEBV/s320/IMG_0144.JPG" width="239" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSXgG9fe-9BV0ZiBqxFgKNs_caHbWFC3E0l2QYVSu3TrJHZKVu7XlYaxgfEeV6uZ-c1sdnBRYN818RXnEFnXVzgJjdmIZexh6jxTjGBGnyOuUhXOIRK9cW0BVfOeXDj97Zx0UZJpVv/s1600/IMG_0181.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSXgG9fe-9BV0ZiBqxFgKNs_caHbWFC3E0l2QYVSu3TrJHZKVu7XlYaxgfEeV6uZ-c1sdnBRYN818RXnEFnXVzgJjdmIZexh6jxTjGBGnyOuUhXOIRK9cW0BVfOeXDj97Zx0UZJpVv/s320/IMG_0181.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsswBPhF4NoRHiHECWPDMhCHsgY1GZCAA-Nv18tj5kqVnKStcXNhKUu1DllH9sJd16BqRRM44zn-Ked-cAMiR9HHlbGpI59LeOkCBeBwnATUaK6AOiYV4EgY_Kl-YSodnRV6_Kfi7u/s1600/IMG_0276.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsswBPhF4NoRHiHECWPDMhCHsgY1GZCAA-Nv18tj5kqVnKStcXNhKUu1DllH9sJd16BqRRM44zn-Ked-cAMiR9HHlbGpI59LeOkCBeBwnATUaK6AOiYV4EgY_Kl-YSodnRV6_Kfi7u/s320/IMG_0276.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Just because we now have Cristina though does not mean we have forgotten about Estella and our promise to SMASH SMA. I have always said that this was not about us it was about raising awareness of this disease and doing all we can to make sure that YOU and other parents don't go through what we did. That is Estella's legacy.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Things have gone quiet but we are just regrouping thoughts and ideas - at the moment</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
We are organising a literature convention on July 6 and 7 at the New York Stadium in Rotherham. Its based around the works of American writer and poet Jack Kerouac and all proceeds will go to Tom Gillingwater's SMA research. Even if you have never heard of Kerouac there's a concert, a film, a play , a party and a great opportunity to meet Maria and me - and to help towards SMA research. There's more details at www.kerouacbeats.blogspot.co.uk or follow the twitter account @kerouacbeats</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
We are still awaiting more news on the political side. Norman Lamb and Nick Clegg are pushing the screening consultation and new MP Sarah Champion is also promoting our cause.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
The Jennifer Trust have announced that they are now supporting Tom Gillingwater</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
We are getting great celebrity support with daily messages from Lauren Carre who has been a great follower</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Wrist bands are still selling to raise funds.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
To be very clear - we still need your support because the campaign is now about making sure that this disease is seeing its last days. So if we look happy - we are - but that doesn't mean that every single day there are not new babies diagnosed with SMA - and that's what we want to stop.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Cristina had her 8 week check up on Monday.</div>
<div class="separator" style="clear: both; text-align: left;">
Last time we had an 8 weeks check up was the day they diagnosed Estella and our world ended.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
She passed with flying colours.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Please stay - we need you </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAdBPoGjg6Wc1Licqiq0NNynN2OGJEdTc3rwbLSvySQLYsCawFBnXhK6umJbf6pOlm-7wKNmDtGsuN4OT_VUNhGMjeTDCxxIs3HFxrHimPTAmzD_YfsPSojt8X1AyIrKQWpFq_bxm8/s1600/IMG_0632.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAdBPoGjg6Wc1Licqiq0NNynN2OGJEdTc3rwbLSvySQLYsCawFBnXhK6umJbf6pOlm-7wKNmDtGsuN4OT_VUNhGMjeTDCxxIs3HFxrHimPTAmzD_YfsPSojt8X1AyIrKQWpFq_bxm8/s320/IMG_0632.JPG" width="239" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1CXffqr-MTbve0dxSZnUj0wm5isrHSr-c6Vh9ECwvxlX2B_-icgLX0eo0ciTIRGIl74uF0A4sweQq-tt5iL36DV0vPHoxgDfQaRontKEa6swjDztc6Kkr1eTs8XB_YbHnrm9ajY41/s1600/IMG_0259.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1CXffqr-MTbve0dxSZnUj0wm5isrHSr-c6Vh9ECwvxlX2B_-icgLX0eo0ciTIRGIl74uF0A4sweQq-tt5iL36DV0vPHoxgDfQaRontKEa6swjDztc6Kkr1eTs8XB_YbHnrm9ajY41/s320/IMG_0259.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf1m4e8jWixjajnM3KJCMrJqo_VbgHCOmk-vUmlh4ok8HqNfhfkHaLgTp4OZxPIbwyyknbgGaIIL6mDJQxGEojXaY5owFAQsIrCuxtRE-ORrO27iCvVq0uM8GBv-AIrlIHQ9ADfHSW/s1600/IMG_0558.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf1m4e8jWixjajnM3KJCMrJqo_VbgHCOmk-vUmlh4ok8HqNfhfkHaLgTp4OZxPIbwyyknbgGaIIL6mDJQxGEojXaY5owFAQsIrCuxtRE-ORrO27iCvVq0uM8GBv-AIrlIHQ9ADfHSW/s320/IMG_0558.JPG" width="239" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqJTcwuiytX4K9HKQOkRQ9vk-t7U_W2fCPl4uMvi_kiG_5gbkc54u2pB9azO-RYEmmRF_CVvtHQxriL3KWnN9K_OUuLh-lNi8SfDY3s76k0SlaZXuBSJku3McUxDpPkjUHVTC2eK9s/s1600/IMG_0420.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqJTcwuiytX4K9HKQOkRQ9vk-t7U_W2fCPl4uMvi_kiG_5gbkc54u2pB9azO-RYEmmRF_CVvtHQxriL3KWnN9K_OUuLh-lNi8SfDY3s76k0SlaZXuBSJku3McUxDpPkjUHVTC2eK9s/s320/IMG_0420.JPG" width="239" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4831070856258014656.post-16752443414909895362013-02-02T18:09:00.001+00:002013-02-02T18:09:20.875+00:00NOT A LOSERYesterday I got one of those heartbreaking messages that I have seen all too often during the last year.A Dad wrote to tell me that he had lost his son aged 18 months to SMA. I wrote back with my condolences and my usual offer of any help and support and then received a response asking how to cope with the loss.<br />
<br />
I will not go into this individual case but lay awake last night I did wonder if it was worth putting a few notes on here that may one day help somebody with their loss. <br />
<br />
The first thing to say is that I am very aware that every circumstance is different and I know there is lots of amazing professional help out there. I would not dream of trying to say that there is a particular way of dealing with the death of a child. There simply isn't.<br />
<br />
What I can do is give you some thoughts as to what happened with Estella and hope that some of these words can make a small difference. <br />
<br />
I know the reason we get asked how to handle <span style="background-color: yellow;">this</span> particular situation is because it appears that we have managed to handle the events that occurred in a particular way. I will elaborate on that later.<br />
<br />
Here's how I see things.<br />
<br />
There is nothing more devastating than losing your child. It is more than a cliche to say that it is unnatural for a parent to outlive their child but cliches exist for a reason and the first feeling when you lose a child is the sense of unfair and harrowing loss. I can not even begin to imagine how it must feel to lose a child suddenly - as in the case of an accident - no time to prepare. No time to even wonder about any consequence. <br />
<br />
We lost Estella over a period of six months from her diagnosis at 8 weeks to her death at 8 months. That period of time allows for a lot of talking and a lot of planning but you are still not prepared or ready as the day your little girl says goodbye is not known. SMA is a cruel and heartless disease. The best way I can describe what happens is that there are a number of very bad days when Estella had some occurrence such as a blockage that prevented her breathing that she overcame. Upon overcoming though she never returned to the same health she had before the attack. You don't see a gradual deterioration you have days when certain skills and abilities are lost never to be recovered. The blessing is that this gives you the pleasure of many good moments and many triumphs and some of my happiest memories are of singing to the little tinker or just sitting for hours stroking her hand. In every moment of pleasure though there is an enormous black hole inside your soul that aches beyond anything I can ever explain. It is constant. It is frightening and it is tragic. You are watching your daughter saying goodbye at the same time as you are watching her grow and develop. There are many moments of silence when you sit alone and scream inside. <br />
<br />
Eventually though we had to say goodbye to Estella. There is a longer description elsewhere in this blog of that Sunday afternoon for the purpose of this let me just remind you that her death was painless , measured, timely and beautiful. We were able to hold her one last time without her breathing mask and the machines and the tubes and for one last time we were able to kiss her and say our final goodbyes. The word beautiful sometimes confuses people and may even offend them. Let me explain. We had had many meetings with people who explained all of the possible options and scenarios that could happen at the end and believe me there were some horrific ones. In the end we had the best possible farewell. Maria held Estella. I held Maria and we saw our daughter fall asleep. We felt her breath and watched her calmly pass with no pain and none of the horrific possibilities that we had been prepared for, We bathed her. We held her. We dressed her. We said farewell.<br />
<br />
So what happens next.I still say that one of the most terrible moments I experienced throughout the whole six months was the unbelievable discussions where you have to sit in a room preparing all of the details for your daughter's funeral. The decisions. The choices. The numb disbelief that you really are talking to people about the type of coffin and the music and the service. Beyond the funeral though there comes the worst bit - the loss.<br />
<br />
OK. You leave the crematorium without your little girl. You have to walk away leaving her behind. You're not going to see her ever again. It is the emptiest and most barren feeling anybody could ever experience. You drive away without your little girl. <br />
<br />
There is then no pathway that anybody can ever tell you how to tread.<br />
<br />
I felt guilty. I am a big hunking lump and I could not protect my little girl from this ending. Nothing I could do could make this disease go away. I promised her I would do what i could to try and help others but there was nothing I could do. I could not help Maria with her loss other than realising whatever I was feeling this generous, gentle perfect Mummy was feeling a hundred times more. I was useless at caring for Estella. Some days I would have to go and walk around the gardens of Bluebell Wood for an hour but while I did that Maria looked after every tube , mask, food issue - Maria very kindly always said that she was maintenance and I was entertainment.I got a couple of hours a day to read Cat in the Hat to Estella and I watched her eyebrow raise in speculative laughter at my tales and songs and tickles. Part of my guilt was wondering if I had done enough as a Daddy. At worst I would think to myself that what I gave to Estella was a disease that was in my genes. That was my present. When those kind of thoughts crept in I managed to deal with them by a kind of logic. Maria also carried SMA so if it was my fault was it also hers ? Of course not that would be stupid to think - so if that was the case then it wasn't my fault either. <br />
<br />
You feel guilty though. You feel guilty any time life becomes normal. I remember watching an episode of Father Ted and laughing at some silly Mrs Doyle comment and then absolutely hating myself for daring to laugh when my daughter was dead. There is one way of thinking though that Maria taught me ( are you starting to grasp how strong she is ) - all she said to me was , "Is this how Estella would want it ?" It's a perfect way of thinking. Would that clever and intelligent and sensitive little girl want Maria and I to be unhappy forever or would she want life to carry on. Would she want us to remember her with fear and whispers or with happiness and wonder?<br />
<br />
The next fact is that if you lose a child you are about to go through the biggest challenge to your marriage that can possibly exist. Many couples end up divorced. Fact. I think we survived for a very simple reason - no matter how low we got we never - never-never blamed each other for anything that happened. I blamed myself. Maria had days when she blamed herself but there was never an instant when I blamed Maria and she never ever blamed me. Maria gave Estella the greatest, most amazing support possible. She lived by Estella's side, She kept me and her parents sane. She made decisions. She fought for Estella when she needed to fight. She kept her alive at least a dozen times. Never blame each other.<br />
<br />
SMASHSMA helped. It gave a focus and passed many hours building up the awareness that is explained in other sections. The point here that I would suggest is that there will be people who want to help you. Let them because they are exceptional people. Some people will not know how to approach you or what to say. Of course they don't - its an experience that they will hopefully never have to feel. Don't turn them away though - take all the support you can. It makes you stronger. <br />
<br />
There will be certain days. Anniversaries. Birthdays. Christmases - so many occasions and moments. Handle them by accepting you will feel bad. Lock yourself away. Take yourselves away. You know those days will hurt so don't pretend that they will not. <br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGN0a-9YUCAxm34rdeOqfV3Qvi_04kbZMIZEl9jM0HR9BYl1NGLuiFrflkf2XFc1yXaOteKSWgp9Tu5ND8Sva0Lh66rTDeTxbZhlrc3yyOmMhAtO-vBoAT7HTgXAI_vmABzKJWFkWx/s1600/IMG_0267.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGN0a-9YUCAxm34rdeOqfV3Qvi_04kbZMIZEl9jM0HR9BYl1NGLuiFrflkf2XFc1yXaOteKSWgp9Tu5ND8Sva0Lh66rTDeTxbZhlrc3yyOmMhAtO-vBoAT7HTgXAI_vmABzKJWFkWx/s1600/IMG_0267.JPG" height="239" width="320" /></a></div>
<br />
The one thing I don't know how to prepare for though is the thing that happened a couple of hours ago. That thing will happen thousands of times.<br />
<br />
I was driving along the motorway. A winter afternoon. Listening to football on the radio. Looking at the traffic. Mind in neutral. Then I noticed how gorgeous the sun seemed streaming through the trees to my left as I drove. Winter sun is white and sudden and hauntingly beautiful. <br />
Bam - thirty seconds later I was still driving with face soaked in tears and my heart pounding. Total loss of sense and calm as from somewhere buried within I could see , hear , touch , smell and taste every single thing about Estella. It came from nowhere. No preparation. Crying Muppet Daddy filled with memory and sensitivity.Somewhere within the neurons connect and all of the pain and all of the hope and all of the memory and all of the tragic silent certainty of death comes howling into your heart and soul. I can't prepare anybody for that and do you know - I wouldn't want to. I would not want those moments to stop ever because when they happen I can.. feel her again. The tears flow and the emotions rage because in the end all of the techniques and all of the coping strategies and all of the logic is absolute nonsense. You lost the most treasured love you will ever know and you are not supposed to accept it - you are not supposed to block it - you are not supposed to forget it.<br />
<br />
How to cope with those moments. Be grateful that you can feel. be grateful that you can remember. Be grateful that for 30 seconds she is with you again. That's the way I flip it to welcome the sadness because always, always, always when the tears stop , when the shaking stops, when the heart beats still again you are left with the warmest of feelings. You are left with the glowing memory of the reality of the child you lost<br />
<br />
And every time that happens you find her again. I'm a soppy git - I see these moments as Estella coming to visit me and when she does ? She doesn't want to see her Daddy crying - she doesn't want to see him upset so if you ever see a wet faced Muppet singing Puff the Magic Dragon or Moon River driving down the motorway don't point and laugh too loud - it's just me or somebody like me remembering better days .<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVGWXwSdtTsI4bh4IGdcwZdkKK2MkcMbEvHpWKF30Ifh4Zlh2a2lAQZEbLkmHU5HwW4S2Nu-m6ksW3m2bHDzfBD3BqUOog_IK_ksNh2lLBJnhghPmJX8m0iWVv14MDXtwACEOcjwg4/s1600/IMG_0278.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVGWXwSdtTsI4bh4IGdcwZdkKK2MkcMbEvHpWKF30Ifh4Zlh2a2lAQZEbLkmHU5HwW4S2Nu-m6ksW3m2bHDzfBD3BqUOog_IK_ksNh2lLBJnhghPmJX8m0iWVv14MDXtwACEOcjwg4/s1600/IMG_0278.JPG" height="320" width="239" /></a></div>
<br />
I don't know if any of that helps. I hope so. What I will say is what I always say. I will do what I can to rid the world of SMA but in the meantime if there are any parents that I can help in any way - then the answer is very simple. tell me where - tell me when and I'll be there. <br />
<br />
Maria and I decided very early on not to go along to support groups and memorial groups and the like - it's not us. We visit Estella. We talk to her. We're even making another baby :) for her to laugh at and look after but as for dealing with losing Estella - we will not be able to do that ever. Part of being a Muppet Daddy and a Cuddly Mummy is refusing to accept that we have lost her. I don't particularly have religious views - sorry I don't - but what I do know is that life goes on, nature is beautiful and by some unbelievable wonderful quantum physics riddle of the universe kind of thingy - ( technical term ) I will hold her again . I will. <br />
<br />
I miss her but she came to visit two hours ago. Tricky little Tinker. <br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvF5e-bEL9p9ShRQCTjQImuZ_N7xQ-PXwsWfXNCZZQT-gW9scYD0l8__ZKVW5VN86vc25UejyJKiINbpQIFX3fOrssmKDByBUo-nl1R8nPZBqajwbjH-WQkZ1VZuntrtPYt8KIlOUs/s1600/IMG_1618.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvF5e-bEL9p9ShRQCTjQImuZ_N7xQ-PXwsWfXNCZZQT-gW9scYD0l8__ZKVW5VN86vc25UejyJKiINbpQIFX3fOrssmKDByBUo-nl1R8nPZBqajwbjH-WQkZ1VZuntrtPYt8KIlOUs/s1600/IMG_1618.JPG" height="240" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2hsDHTUhxW__FjINlrJU9_fV-QZkR4lNARXAzxGNWjmxQtb5Em4HLv8KCEp60hpDn_iF9UjKGfwnoSx3c9h5fNEsxgs_86AzQGaXMqPr5nf2OAdWY1RDMfffIIk56Wfj5s27PYvem/s1600/IMG_0265.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a> </div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkH4h95NrNoOozGP88z__T35Q_B44bt-85P2MOXixXxF6S3DEX_E4EBJdId6m3VbUQxQ_qdAPdt2Q-mKZQEG9ExnwV1TnOHQ3J9vP00JPpwCBVfCXx1C44jRgwwdqxGVaaetKe92aW/s1600/IMG_0217.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkH4h95NrNoOozGP88z__T35Q_B44bt-85P2MOXixXxF6S3DEX_E4EBJdId6m3VbUQxQ_qdAPdt2Q-mKZQEG9ExnwV1TnOHQ3J9vP00JPpwCBVfCXx1C44jRgwwdqxGVaaetKe92aW/s1600/IMG_0217.JPG" height="320" width="239" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2hsDHTUhxW__FjINlrJU9_fV-QZkR4lNARXAzxGNWjmxQtb5Em4HLv8KCEp60hpDn_iF9UjKGfwnoSx3c9h5fNEsxgs_86AzQGaXMqPr5nf2OAdWY1RDMfffIIk56Wfj5s27PYvem/s1600/IMG_0265.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2hsDHTUhxW__FjINlrJU9_fV-QZkR4lNARXAzxGNWjmxQtb5Em4HLv8KCEp60hpDn_iF9UjKGfwnoSx3c9h5fNEsxgs_86AzQGaXMqPr5nf2OAdWY1RDMfffIIk56Wfj5s27PYvem/s1600/IMG_0265.JPG" height="239" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkH4h95NrNoOozGP88z__T35Q_B44bt-85P2MOXixXxF6S3DEX_E4EBJdId6m3VbUQxQ_qdAPdt2Q-mKZQEG9ExnwV1TnOHQ3J9vP00JPpwCBVfCXx1C44jRgwwdqxGVaaetKe92aW/s1600/IMG_0217.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a> </div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4831070856258014656.post-70776070417205746682013-01-27T12:12:00.003+00:002013-01-27T13:33:45.052+00:00CRISTINA ESTELLAIn am writing this two weeks before going to Spain for the birth of our daughter Cristina Estella.<br />
<br />
Maria is already in Spain. I miss her so much and am writing this for her to read too. <br />
<br />
We have done a lot in the last year to try to give SMA the kicking it has deserved and to keep my promise to my little darling to SMASH SMA.<br />
<br />
When I say we have done a lot it has mainly been you that has done all the work.<br />
<br />
There have been many highlights<br />
<br />
<ul>
<li>The government have met with us and agreed a consultation into SMA prevention and awareness</li>
<li>SMA has been raised in the House of Commons and there has been a reception about this dreadful disease</li>
<li>We have had the unswerving financial support of Morrison Facility Services who sponsored a banner at a football stadium in Estella's name and have provided so much more support.</li>
<li>We have met with Pfizer and they have moved from a stance of not caring that SMA ( milk ) had the same name as SMA ( disease ) to selling their milk brand and giving 70 million to SMA research.</li>
<li>We have forged links with The Jennifer Trust and the SMA trust and believe we have had a say in a far more constructive organised response to SMA research and support</li>
<li>We have funded an assistant for the Tom Gillingwater SMA team in Edinburgh and continue to provide funds to the team that I believe are having major research breakthroughs</li>
<li>We have had our story in the Sunday People and beyond thanks to the treasured involvement of Natalie Cassidy</li>
<li>We have had the support of far too many celebrities to mention them all with over 1000 now having mentioned SMA on Twitter and facebook.</li>
<li>We have 42000 Twitter followers and 3000 on Facebook</li>
<li>We have provided funds to the Jennifer Trust and Bluebell Wood</li>
<li>We have been gifted 1,000 wrist bands and envelopes to raise money for SMA research</li>
<li>We have (sadly ) given advice and support to dozens of parents who have had their child diagnosed with SMA during the last year</li>
</ul>
But the real highlight<br />
<br />
The real highlight is that we are having a baby next month who is free from SMA. The real highlight is that the most natural, gifted, wonderful Mum I have ever seen will be a Mum again and I can see her face smile. The real highlight is that we will never forget our little Tinker but we know that she has supported us on hundreds of occasions during the last year and she would want her Mummy to be happy. We are going to have a baby.<br />
<br />
Maria has been an absolute rock throughout everything. I have seen her low but all she ever thinks about is her Mum and Dad and me and how we feel. All the while she is a Mum who lost her child. She is the best wife anyone can have but she is also a natural and perfect Mummy. Don't tell her I said so though :)<br />
<br />
There's an elephant in the room question though. Somebody said to me the other day. How does it feel knowing you are going to be a Dad again? There's the question - because I can tell you this - I don't think that even during my darkest moments I have stopped being a Dad. When I was most down you wonderful people sent messages saying that I was still Estella's Daddy and that I always would be. There are no words to explain the good that your messages did.<br />
<br />
<br />
I can't see my little girl anymore. I will never see her run or play or laugh . I never heard her say Daddy. I am sure having Cristina will be amazing and wonderful - and I'm not a fruitcake - I know she is a different child but as I watch her grow and as I play with her and as I tell her tales please forgive me the odd moment when I remember another little girl who was and always will be my entire world. I have thought long and hard about which songs to sing and which tales to tell and I have decided they will be the same ones because that way I can sing again and that way i can read again and that way both my little girls will always be with me . i hope that makes some kind of sense.<br />
<br />
The biggest kicking we have given to SMA is to tell it that it will not end our lives and it will not take away every memory of my darling Estella and it will not stop us from loving and living again. I hope that at least one parent reads this who is currently in a dark place and if that's you I can tell you this...<br />
<br />
The sun does rise in the morning. The pain never goes away<br />
The memories will become kinder. You will smile again.<br />
<br />
I know what you're thinking. How can you smile again without your treasure and isn't it disrespectful to them and their life for you to be happy.<br />
<br />
It's a simple answer but one I walked thousands of miles for<br />
<br />
It is disrespectful to them for you NOT to be happy.<br />
<br />
My little girl looks down on me every day. She does not judge or think I have forgotten her because I groan when Manchester City lose. She does not think that I have better things to be bothered about than worrying about the snow. She does not mind the idea of another baby wearing her clothes and playing with her toys. Estella was not like that. She would want life to go on as normally as possible.<br />
<br />
Do you know why ?<br />
<br />
Because we loved each other then - and we still love each other now and didn't somebody once say<br />
<br />
Love is never having to say you're sorry ?<br />
<br />
<strong>It is disrespectful to them for you NOT to be happy.</strong> <br />
<br />
In a couple of weeks time we are having a baby. We could not be happier<br />
<br />
Every moment that we shared with Estella remains. Every morning play, every silly song, every heart rending stroke of her little cheek.<br />
<br />
Take a look at the photo below. That's my big stupid hand and that's Estella's trying to grip my finger. That's Mr Giraffe watching. <br />
<br />
I'm looking a my empty hand now and I can still feel the touch of her little fingers. If I close my eyes and try with all my heart I can still feel her hand in mine. Then she is not gone. Then she is always here.<br />
<br />
And because she was here there may soon be other babies who can stay with their Daddy for a wee while longer. There may be other babies who will hear a few more songs and listen to a few more tales. Because Estella existed and because her spirit and her love continues to exist. <br />
<br />
<br />
<strong>Take That, SMA</strong> - she's beating you. Oh yes she is <br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiUxFgylCOtRLps8fk7gwxP5-HiXou3KE3G_YiqCSSiozO4s8CtQWVjm0RWZbDunGNdxEun9BsItH8palL1MS8LsMVSJtSJ71FqjVj9G1VgC5Pbqc5ZmxhJo5r1qcvXUl1GSKvWuUy/s1600/IMG_0205.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiUxFgylCOtRLps8fk7gwxP5-HiXou3KE3G_YiqCSSiozO4s8CtQWVjm0RWZbDunGNdxEun9BsItH8palL1MS8LsMVSJtSJ71FqjVj9G1VgC5Pbqc5ZmxhJo5r1qcvXUl1GSKvWuUy/s1600/IMG_0205.JPG" height="239" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-4831070856258014656.post-18410211830536606782013-01-27T11:34:00.000+00:002013-01-27T11:34:50.435+00:00WHEN I NEED YOUThis is an update of one of the very first postings I did just over a year ago. We get asked a lot by people wondering how they can help SMASH SMA. Hopefully the answers are here.<br />
<br />
What needs to be clear right here at the start though is that I genuinely believe they are close to beating this dreadful disease and my single bottom line aim is that Estella's legacy is to save other babies from dying. <br />
<br />
<br />
This isn't an entry where I am writing about Estella's as such. It's more a sort of FAQ for the type of questions I tend to get asked the most.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1akG6NSv_MiYQcuxbb3NKyRnxGOAjp9RRy0pLb3m_kEecWdNDx6qeL1w2NaPA9BzFdAHAFYIN_SAwMWtHN7VFYgDXSmzqYxaiGMBMQ2XfGLnVhq3z_TLF05m4STnCNur4f3skGgbv/s1600/Estella+-26.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1akG6NSv_MiYQcuxbb3NKyRnxGOAjp9RRy0pLb3m_kEecWdNDx6qeL1w2NaPA9BzFdAHAFYIN_SAwMWtHN7VFYgDXSmzqYxaiGMBMQ2XfGLnVhq3z_TLF05m4STnCNur4f3skGgbv/s320/Estella+-26.jpg" height="320" rea="true" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
If you want the whole story in two minutes then this video tells all</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.youtube.com/watch?v=34RmmLWhr80">http://www.youtube.com/watch?v=34RmmLWhr80</a></div>
<br />
Remember please the only expertise or experience I have is the events that happened over eight months last year with Estella. These are well documented. Much of what I say may be wrong and I am open to new ideas but this is where I stand today. I get approached on a regular basis by parents who have just been told their child has SMA. I don't have answers but I will tell you this - I will get in my car and drive anywhere in this country to talk to you if you think our experience can help. <br />
<br />
The most common reaction when people hear about Estella and our experience is that <strong>they have never heard of SMA.</strong> This is not just people in the street it is health professionals , midwives , carers , - so many people who have never heard of the disease.<br />
<br />
So that explains the first simple philosophy of the SMASH SMA campaign<br />
<br />
<strong>IF SMA IS THE NUMBER ONE GENETIC KILLER OF BABIES AND 1 IN 40 OF US CARRY THE GENE THEN WE HAVE TO ENSURE THAT EVERYONE HAS HEARD OF IT.</strong><br />
<br />
This is the awareness raising stage. We are not doing a bad job here. We could do better if we really went for it with the media but I have explained my thoughts on that in another blog SMA AND THE MEDIA. Put simply we do not want this to be a half page story about us and a little girl who died. The story is bigger than that and we will make more of a commotion and have more impact if we avoid the obvious routes. I am convinced of that.<br />
<br />
The second thing we want to do is to try to make sure that what happened to us does not happen to you and to others who are becoming parents. This is linked with awareness raising but it is also to do with PREVENTION - its a petition to the UK Government to introduce testing for SMA for all. <br />
<br />
We started a petition to get screening for SMA but in the end this was not needed as by taking our campaign direct to parliament the government have agreed to conduct a consultation about SMA screening. <br />
<br />
The thinking behind this is simple.<br />
<br />
If 1 in 40 carry the gene then all women need to be told that they could be carriers and that a FREE test is available. The test is a simple blood test. If they are carriers then they have this information and can ask for any future partners to be tested. Remember it needs both parents to be carriers to have a 1 in 4 chance of an SMA baby. <br />
<br />
If both potential parents are carriers then they may wish to examine IVF as an option to ensure that their child does not have SMA. <br />
<br />
There is a test that can be done when the foetus is 10 weeks old that identifies if the baby has SMA. Obviously this introduces moral, ethical and religious debates. To be honest we want to stay out of such debates as we believe that parents have the right to make their own choices. Other tests are done at various stages that identify significant possible defects so why should SMA be any different.<br />
<br />
As I said I do not want to get into the debates about 10 week testing which is why we are petitioning for a simple test that means people do not have to get to that stage. What I will say -and this is my personal opinion - is that knowing what we know now about Estella's life we would certainly have gone ahead with having her and knowing her. She was never in pain or distressed and was very loved. <br />
<br />
We will need your support in the consultation.<br />
<br />
The third way that we are trying to help involves raising research funding.<br />
<br />
From the start we did not want to raise money for Estella - we thought that this was a far bigger issue. There are fantastic organisations out there and there is research already taking place. I believe that if we did nothing the cure for SMA is three to four years away on the horizon. I have a simple philosophy if Estella can bring that cure forward by one day then there will be less children and families who are touched by SMA and some of the children who have SMA already may be cured or have their lives considerably improved. Too late for Estella but what a legacy it would be if she and her story brought that cure closer.<br />
<br />
We therefore support anything and anything that raises funding for SMA. There are many amazing organisations out there - all you have to do is google Spinal Muscular Atrophy and they pop up. An example of the success we are having is that the SMA milk company have contributed £ 25,000 to one of those organisations ( the Jennifer Trust ) and there will be much more in the pipeline. <br />
<br />
We have now asked that any funding that we raise goes to Tom Gillingwater at Edinburgh University. The team there are working on SMA prevention and we have been to see them. Again this is explained in the blog. They need £ 50,000 this year and every penny you donate counts towards their research.<br />
<br />
For full details read<br />
<br />
<a href="https://edinburghuni.workwithus.org/Fundraising/Donate.aspx?page=7182">https://edinburghuni.workwithus.org/Fundraising/Donate.aspx?page=7182</a><br />
<br />
<br />
<br />
So that's awareness , prevention and research funding <br />
<br />
We hear every day from parents who have children diagnosed with SMA. What I would say is that every case is different and every journey will be different. We will gladly talk about our own experiences and we will give any amount of time needed - but they are our experiences. They are documented well enough on the other pages here but please believe me I answer every single message we receive asking about SMA and Estella.<br />
<br />
There are three ways we are trying to keep people up to date. <br />
<br />
One is our twitter account. You can follow us on @estellastar1 - I answer every single DM and follow people who follow us. There are over 40,000 followers which makes this the single biggest SMA related Twitter account by far.<br />
<br />
Two is our Facebook account - look up Estella Meansstar and you will find us<br />
<br />
<a href="http://www.facebook.com/profile.php?id=100003101507661&ref=tn_tnmn">http://www.facebook.com/profile.php?id=100003101507661&ref=tn_tnmn</a><br />
<br />
Third - you are reading it now - there is an even better blog available though from Cuddly Mummy <br />
which is called NO MORE ANGELS<br />
<br />
<a href="http://estellasweetman.blogspot.com/">http://estellasweetman.blogspot.com/</a><br />
<br />
I used to be very cynical about social media. I now see that it will help bring about a cure for SMA. We have had amazing celebrity support but also a number of people who have made #smashsma their mission. We have met some wonderful people on there. Intelligent and resourceful people who did not know Estella but fight for a solution to SMA every day. They know who they are - they are exceptional.<br />
<br />
On a personal level I have to mention BLUEBELL WOOD as they were the hospice where Estella lived her last two months. I have said that fund raising is a separate issue but if anybody wants to send any funding in their direction then please read the story below and send them zillions. Estella had a childhood because of Bluebell Wood - simple.<br />
<br />
<a href="http://www.bluebellwood.org/estella.php">http://www.bluebellwood.org/estella.php</a><br />
<br />
Last of all - you. If you are reading this then I thank you. You are obviously well into SMASH SMA mode. If you have any ideas let me know. <br />
<br />
Thanks xxUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-4831070856258014656.post-76154039242713513502013-01-04T09:44:00.000+00:002013-01-04T09:44:23.266+00:00HAVE I GOT NEWS FOR YOU <div style="text-align: left;">
<strong>PFIZER LISTEN AND DECIDE TO SPONSOR SMA CURE </strong></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<strong>You may remember that last January we had a couple of meetings with Pfizer , the drug company, to discuss the fact that they produced SMA milk. At the time we said that they should realise the effect that the name has on parents who have children dying from Spinal Muscular Atrophy. When they said that they would not change the name we suggested that they should be contributing to SMA research. They contributed £ 25,000 which we gave to the Jennifer Trust.</strong></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<strong>One year on and Pfizer have now announced that they will contribute $ 70 Million to SMA research through the company REPLIGEN who are working on an SMA medicine. In fact clinical trials of a new drug are starting in the first quarter of this year.</strong></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<strong>We could not be more pleased with this development and recognise that Pfizer actually do listen to people. They even sold the SMA milk brand.</strong></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<strong>We are , today, stopping the Shame on Pfizer campaign in recognition of the fact that they are now so instrumental in looking for a cure for SMA. Well done to everybody who contacted them last year</strong></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<strong>Government launching a consultation on screening for SMA and now this major funding development. I like the look of this 2013 !</strong></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<strong>Repligen Announces Licensing Agreement with Pfizer<br />for Spinal Muscular Atrophy Program</strong></div>
<br />
<br />
<div style="text-align: left;">
<br /></div>
January 03, 2013 – Repligen Corporation (NASDAQ:RGEN) announced<br />today that it has entered into an exclusive worldwide licensing agreement with Pfizer Inc. to advance<br />Repligen’s spinal muscular atrophy (SMA) program, originally in-licensed from Families of SMA<br />(FSMA). The SMA program includes RG3039, a small molecule drug candidate in clinical<br />development for SMA, as well as backup compounds and enabling technologies. Under the terms of<br />the agreement, <strong>Repligen is entitled to receive up to $70 million from Pfizer,</strong> commencing with an<br />upfront payment of $5 million and total potential future milestone payments of up to $65 million as<br />well as royalties on any future sales of SMA compounds developed under the agreement. SMA is an<br />orphan neurodegenerative genetic disease that presents early in life.<br />“This agreement is consistent with the strategic decision we announced in August 2012 to focus<br />Repligen’s internal efforts on the growth of our bioprocessing business, while seeking external<br />partners for our therapeutic development programs,” said Walter C. Herlihy, Ph.D., President and<br />Chief Executive Officer of Repligen. “We believe this collaboration with Pfizer, a leading<br />pharmaceutical company with specialized efforts in orphan and genetic diseases, <strong>has the potential to<br />accelerate the development of therapies for SMA.”</strong>“There is a critical need to expedite potential treatment solutions for rare diseases such as spinal<br />muscular atrophy, where patients have such limited options,” said Jose Carlos Gutierrez-Ramos,<br />Senior Vice President, Pfizer BioTherapeutics R&D. <strong>“This partnership will combine our expert<br />capabilities in advancing molecules for genetic diseases with Repligen’s leading SMA program.”</strong>Under the terms of the agreement, Repligen is responsible for completing the first two cohorts of an<br />active Phase 1 trial evaluating RG3039 in healthy volunteers, which it anticipates will occur during<br />the first quarter of 2013. Repligen will also provide certain technology transfer services to Pfizer who<br />will then assume full responsibility for the SMA program moving forward, including the conduct of<br />any registration trials necessary for product approval. Repligen has previously received U.S. Orphan<br />Drug and Fast Track designations for RG3039 for the treatment of SMA, as well as Orphan<br />Medicinal Product designation in the EU.
<div style="text-align: left;">
<br /> </div>
<div style="text-align: left;">
About Spinal Muscular Atrophy<br />Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease in which a defect in<br />the SMN1 (survival motor neuron) gene results in low levels of the protein SMN and leads to<br />progressive damage to motor neurons. It is the leading cause of infant mortality and the second most<br />common inherited neuromuscular disease, with symptoms that typically emerge before the age of<br />two. SMA is characterized by progressive muscle weakness leading to severe physical disability and<br />often, early loss of life due to respiratory insufficiency.<br />About Families of SMA<br />Families of SMA is the world’s leader focused on funding SMA research to develop a treatment and<br />cure for the disease. The successful results and progress that the organization has delivered, from<br />basic research to drug discovery to clinical trials, provide real hope for families and patients impacted<br />by the disease. The charity has invested over $55 million in research and has been involved in<br />funding half of all the ongoing novel drug programs for SMA. Families of SMA is a nonprofit<br />501(c)3 organization, with 31 Chapters and 90,000 members and supporters throughout the United<br />States. The organization’s work has produced major discoveries, including identification of the<br />underlying cause and a back-up gene for the disease, which provides a clearly defined target for<br />disease altering therapies. The organization is also dedicated to supporting SMA families through<br />networking, information and services and to improving care for all SMA patients. For more<br />information: <a href="http://www.curesma.org/">www.curesma.org</a>.<br />Repligen Announces Licensing Agreement with Pfizer for Spinal Muscular Atrophy Program,<br />January 03, 2013</div>
<div style="text-align: left;">
About the Muscular Dystrophy Association<br />The Muscular Dystrophy Association (MDA) is the leading nonprofit health agency dedicated to<br />finding treatments and cures for more than 40 neuromuscular diseases, including SMA, by funding<br />worldwide research. MDA also funds comprehensive health care and support services, advocacy,<br />information and education, and accessible summer camp for thousands of youngsters fighting<br />progressive muscle diseases. To date, MDA has invested more than $41.6 million in SMA research,<br />funding basic research and clinical trials of therapeutic strategies such as gene-based therapies, smallmolecule<br />development, and stem cells. MDA, along with other SMA patient advocacy groups, has<br />been working with policymakers to explore the potential of expanding newborn screening panels to<br />include SMA. For more information, visit mda.org and follow MDA on Facebook<br />(facebook.com/MDAnational) and Twitter (@MDAnews).<br />Repligen Corporation<br />Repligen Corporation is a life sciences company focused on the development, production and<br />commercialization of high-value consumable products used in the process of manufacturing<br />biological drugs. Our bioprocessing products are sold to major life sciences and biopharmaceutical<br />companies worldwide. We are a leading manufacturer of Protein A, a critical reagent used during the<br />production of monoclonal antibody therapeutics. We also supply several growth factor products used<br />to increase cell culture productivity during fermentation. In addition, we have developed and market<br />a series of chromatography products used in the purification of biologics, and sell test kits to ensure<br />final product quality. Aside from our core bioprocessing business, we have a portfolio of clinicalstage<br />partnering assets, including a pancreatic imaging agent in Phase 3 development and two central<br />nervous system orphan drug candidates. Repligen’s corporate headquarters are located in Waltham,<br />MA, USA; we have an additional manufacturing facility in Lund, Sweden. For more information,<br />please visit our website at <a href="http://www.repligen.com/">www.repligen.com</a>.</div>
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-4831070856258014656.post-34616220956343302702012-12-30T15:48:00.000+00:002012-12-30T15:48:04.515+00:00NEW DAWN, NEW DAY / FEELING GOOD<span style="font-size: large;">Stunning News - For the first time, EVER, SMA is going to be reviewed by the Govt with a view to pre-conception screening. </span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">We have received a letter from Norman Lamb MP, who is the Minister of State for Care and Support at the Department of Health.</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">It is a lengthy letter, that is copied in to the Deputy Prime Minister but here is a summary</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">Dear Tom and Maria</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">I wanted to write to congratulate you on the success of your evening reception on September 18 , and to commend your work to raise awareness of spinal muscular atrophy (SMA) through the SMASHSMA campaign. I know many MPs and supporters ( myself included ) were moved to hear the story of your daughter Estella. I was also impressed to read your blog setting out the successes of your campaign, and wish you every success in the future on campaigning on what is an important issue. </span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">I am the Minister responsible for policy relating to long term conditions , and following your reception, I asked my officials to investigate the possibility of setting up a screening programme for those who might want to be tested for SMA</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">The letter then goes on to say that </span><br />
<span style="font-size: large;"></span><br />
<ul>
<li><span style="font-size: large;">The UK National Screening Committee ( UK NSC) are responsible for advising ministers on all aspects of screening policy</span></li>
<li><span style="font-size: large;">UK NSC will now review SMA screening programmes including pre-conception, antenatal and newborn screening for SMA.</span></li>
<li><span style="font-size: large;">This is the FIRST time the UK NSC have considered SMA for screening</span></li>
<li><span style="font-size: large;">The review will take the form of a PUBLIC CONSULTATION in the new year. More details of the consultation will come through next year. In the meantime any person or organisation wanting more details can look at <a href="http://www.screening.nhs.uk/">www.screening.nhs.uk</a></span></li>
</ul>
<span style="font-size: large;">Once again congratulations on the success of your reception , and I wish you the very best in your future campaigning endeavours</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">NORMAN LAMB</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">I will be responding personally to Mr Lamb and Nick Clegg this week but what does this mean for SMA</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">1) There is now no need to get 100,000 sigs to bring SMA to the Government's attention. This has now been done.</span><br />
<span style="font-size: large;">2) For the first time ever, screening for SMA is being consulted on</span><br />
<span style="font-size: large;">3) When the consultation starts we will be calling upon SMASHSMA followers to be vocal about the need for screening and SMA research. We will be asking stakeholders to register for the consultation and to make their views known.</span><br />
<span style="font-size: large;">4) Above all it means that as 2012 ends we have achieved the first goal of the SMASHSMA campaign. We have brought SMA right to the front of government and medical screening attention. Through your efforts SMA has been raised from a disease that nobody had heard of to one that is now firmly on the government and DOH radar. By any stretch of the imagination that is a major achievement. Thankyou to every person who has followed the campaign this year. Well done - you wonderful people</span><br />
<span style="font-size: large;">5) Well done to Mr Lamb and Mr Clegg too for taking this matter seriously and for moving SMA up the political and research agenda. </span><br />
<span style="font-size: large;"></span><br />
<br />
<br />
So the year ends on a high as far as SMA and the possibility of screening is concerned. <br />
<br />
What matters now is to make sure that the consultation is done correctly and that the spirit and the drive of this cause gets through - in the end this is all very, very simple. We are talking about a disease that is carried by 1 in 40 people. If those people are unlucky and have a baby born with SMA type 1 then there is no cure. That baby will die. It would be good if those 1 in 40 people knew who they were so they can take informed decisions and have choices. <br />
<br />
What parent would disagree with that.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihrnmsc2Dd_TWWYq7umaiSdl11YKQzxx2g0GMP6mfOk6rKV_MB5RiPe_A1mVDOka8cHTnh0o2YAvQ7QI-RrIcZIr9nKRWZbvqF4JwaX79d1_XM3gmHERd3vnnfXkKUF6Zn5lDxSSke/s1600/IMG_1450.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihrnmsc2Dd_TWWYq7umaiSdl11YKQzxx2g0GMP6mfOk6rKV_MB5RiPe_A1mVDOka8cHTnh0o2YAvQ7QI-RrIcZIr9nKRWZbvqF4JwaX79d1_XM3gmHERd3vnnfXkKUF6Zn5lDxSSke/s1600/IMG_1450.JPG" height="240" width="320" /></a></div>
<br />
Estella's life was short and free from pain. That said we had to kiss her goodbye when she was only eight months old. If her legacy is that other parents don't have to go through that pain then I am sure she would be very happy. I have told you before , my little girl had wise eyes and an old soul in a little body that didn't work too well. She would very much like the idea of sparing sadness, she would very much like the idea of helping others.<br />
<br />
Thankyou to everybody who has given so generously of their time.<br />
<br />
Put your feet up for a couple of days. We#re going to need you again soon. <br />
<br />
It's a new dawn , it's a new day - and we're feeling good. Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-4831070856258014656.post-66425317093431253512012-12-28T13:00:00.002+00:002012-12-28T13:01:05.999+00:00STOP PRESSTwo days after I posted a blog regarding disappointment at a lack of follow up from the reception at the House of Commons I am told a letter has arrived at home from the Minister for Health giving details of a consultation. <br />
<br />
I would still argue that this is not what was suggested at the time but will wait to read the letter before commenting. In the meantime please keep this in mind when reading the blog entitled The Good, The Bad and the Pretty.<br />
<br />
I would very much like to believe that the support shown in September was genuine and remain open minded. Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4831070856258014656.post-57970046878661852892012-12-25T13:08:00.001+00:002012-12-25T13:08:49.964+00:00AND TO EACH A GOOD NIGHTChristmas Day<br />
<br />
It's an entirely different feel to last year. We are in England rather than Spain - Cristina is due in 8 weeks or so which means we stayed here and had Maria's parents over for a few days. I know she is a wee bit sad but we have had a good day and there are a fair few presents flying about ( literally in the shape of my remote controlled helicopter )<br />
<br />
We had a trip down to Estella's tree this morning. I had never noticed before that it is an evergreen and that it was the only one by the pond still to be green and brimming with life. As always as soon as we touched the wood time melted away and we were back with Estella. Heart wrenching tears from Maria and that feeling I get as if my soul had died with her. Anybody who saw us would not know whether to laugh or call the Funny Farm as we hug a tree from both sides and talk to it as we cry. <br />
<br />
We always take a present along. Today we wanted her to have her first ever orange and so peeled it and left the flesh and skin to decompose into the ground but we also took a Gingerbread house. An inspired present choice from Maria. Usually we leave the present there in the hope that a family comes by and takes it but today it soon became clear that the birds were interested. We took off the wrapper and set the house down in front of Estella's tree so she could have a good view.<br />
<br />
<br />
Birds are daft<br />
<br />
They flocked around the house but did not realise that they could eat it. It was like watching the apes in 2001 circling the monolith until one of them develops the courage and intelligence to touch it. Eventually after breaking pieces off they worked out it was edible and started to feast. Our tears had gone and we were laughing at the birds and the Christmas morning show.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpxz33ba8hDitav3m8W5ekkE1bvmN9tQ-VBrX41sSN22HIjGdk8EuoLkvFcRSfiUlSGNnnE_hT9e5iDPZIsdY851edLPkFFa7bYiM8ys8rxGmi5DLoPT-4AvrwlnzjjDDIi50zXH2G/s1600/xmas2012.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpxz33ba8hDitav3m8W5ekkE1bvmN9tQ-VBrX41sSN22HIjGdk8EuoLkvFcRSfiUlSGNnnE_hT9e5iDPZIsdY851edLPkFFa7bYiM8ys8rxGmi5DLoPT-4AvrwlnzjjDDIi50zXH2G/s1600/xmas2012.JPG" height="320" width="239" /></a></div>
<br />
Things are better - we know that<br />
<br />
But they will never be the same. All that happens is that the heartbreaks creep up on you sometimes when you are least expecting them. The nice thing is that the happy memories also suddenly slide into focus at unusual moments. I still feel Estella in the air and hear her in the night. I still miss her with more pain than I ever thought possible. <br />
<br />
I know that it's a special day to day but I have been so annoyed with myself for not updating you all on what is happening. We have a little girl arriving in February - today Maria held her bump against Estella's tree for her to meet with Cristina. They will have a lot in common. We know that Cristina will be her own person though but one day when we can we will tell her about the little diamond who paved the way for her. The little girl who showed more bravery in her few short months than I have seen in a lifetime.<br />
<br />
We will tell Cristina about her big sister - and we will tell her with smiles and wonder<br />
<br />
And we will never forget her and the life she gave us<br />
<br />
Happy Christmas everybody - cuddle your loved ones and sleep tight<br />
<br />
And to each a good night . <br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY_PRDFRsFLer2EqiUHhCUJ-99zFoyr5DlSbPb4IfWV7iQLKqyH0bbRCSceXiTu-sm4G78pWXHoAAiL3qAAUbOYiTBGC7SPrGTw-R4WORchKvk04SLZjjTaa8BqnaUC6XDgkm5CKGE/s1600/xmS.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY_PRDFRsFLer2EqiUHhCUJ-99zFoyr5DlSbPb4IfWV7iQLKqyH0bbRCSceXiTu-sm4G78pWXHoAAiL3qAAUbOYiTBGC7SPrGTw-R4WORchKvk04SLZjjTaa8BqnaUC6XDgkm5CKGE/s1600/xmS.JPG" height="320" width="239" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeMDwsczaa40tlMdd8YxIsaWq1pBmNftHYPUcV5emi614_2kkgK6kfZk0l8YcYnYA8X0NNYJs2KHwhXBof3Z3UqvIMltJmh7vyG7H7QQ81-Vn_wJH4U_VJVBjYKr_Kgg049cwQ2xqN/s1600/photoAaA.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeMDwsczaa40tlMdd8YxIsaWq1pBmNftHYPUcV5emi614_2kkgK6kfZk0l8YcYnYA8X0NNYJs2KHwhXBof3Z3UqvIMltJmh7vyG7H7QQ81-Vn_wJH4U_VJVBjYKr_Kgg049cwQ2xqN/s1600/photoAaA.JPG" height="320" width="239" /></a></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4831070856258014656.post-88158057467650231582012-12-25T12:45:00.002+00:002012-12-28T12:57:41.450+00:00THE GOOD , THE BAD and the PRETTY<br />
<br />
<span style="font-size: large;">It's been a while.</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">There has been a lot going on. It started out that I did not want to write up details of the trip to London for the SMASHSMA reception with Nick Clegg as I wanted to be able to report on outcomes. I wanted to give time for things to settle to evaluate how succesful the event had been. For the background please see earlier posts. </span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">So much has happened I hope you will forgive me just using bullet points</span><br />
<span style="font-size: large;"></span><br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<ul>
<li><span style="font-size: large;">The reception in London was a massive success. We had the Deputy Prime Minister, Nick Clegg, and the Health Minister, Norman Lamb, there as well as numerous MPs and other guests. At the time we were delighted with the session which went on for two hours. The Gillingwater SMA team from Edinburgh were on form revealing some groundbreaking SMA research that had been directly funded by your contributions. An amazing evening. </span></li>
<li><span style="font-size: large;">Mr Clegg made a speech and instructed Norman Lamb to look into the possibility of testing for the gene that is carried by 1 in 40. He took our details and said that as he had just come into the post it would take 3 to 4 weeks to contact us to discuss in more detail how he could help. Mr Clegg had already asked for a consultation into SMA and we were awaiting contact on this. </span></li>
<li><span style="font-size: large;">The London reception could not have happened without Andrew Roddison and Morrisons Facility Services who sponsored the reception and made sure that we had a wonderful memorable day in London. They have been great supporters and tremendous advocates for smashing SMA funding sponsorship at Rotherham United and paying for every penny at the reception. </span></li>
<li><span style="font-size: large;">We had support from some of our most vocal tweeters and that was one of the main joys of the day - meeting some of you in the flesh. It was great to see people who had been so vocal on Twitter having their time in the sun too. Maria did point out that they were all female and all pretty but I put that down to sheer random luck :)</span></li>
<li><span style="font-size: large;">Natalie Cassidy came down and was a great help on the day.She played the room and knew her stuff and gave a touch of celebrity and glamour to the event.The support of Natalie has been a cornerstone of the campaign. She is a true star.</span></li>
<li><span style="font-size: large;">We were told by the Health Minister that he was very moved by our case and that he would be in touch in three or four weeks - that never happened. To be honest that has been the first major set back of our campaign. The Government showed interest on the evening but did not go through with their promise to stay in touch . Everyone tells me I was politically naive to trust them and I apologise to everybody who has followed our campaign for doing so. </span></li>
<li> <span style="font-size: large;">It has now been almost a year to the day that we first met with Nick Clegg. I was convinced on the night that our presentation had moved him and it would have been a perfect way for Mr Lamb to make a splash right at the start of his new position. My old Headmaster always said that people should be judged not by their words but by their actions and as nothing has happened we have almost given up hope of true political support. I MUST point out that this is not a political decision. It was never about parties - It was about our little girl Estella and we trusted Nick Clegg because he is a Husband and a Father. There are probably good reasons why we have not been contacted but it would have been nice to update us with progress. </span></li>
<li><span style="font-size: large;">For clarity - the Gillingwater campaign needs £ 50,000 to keep going strong for 2 years. It is our belief that the breakthroughs they are having will make a MAJOR difference to the SMA experience for thousands of families. Tom Gillingwater forbids me from using the word cure ever - but he knows what I think :)</span></li>
<li><span style="font-size: large;">We have continued to try and raise money for Tom Gillingwater - this will increase soon due to the kind donation of 1000 SMASHSMA bracelets and envellopes by twitter followers. We will be passing over the first £ 300 or so in January and there will be a monthly donation beyond that. </span></li>
<li><span style="font-size: large;">We have moved house into an amazing place that has a lovely nursery for Cristina ( note new Spanish spelling )</span> </li>
<li><span style="font-size: large;">We have had Maria's parents over for a pre-Christmas Christmas. Great success and those of you who remember last Christmas will be pleased to see them looking so genuinly happy. They were our greatest rock during our short time with Estella and its now time for them to have the happy years they deserve. </span></li>
<li><span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsladAXGnI0kZmkDfIAviYk7qWm5x8pGslKK_lLqxG74fj5_-7n4Q8VimJrIleo_TXdC3PelYYz7Nou3mMz3iKrBWXi1U4Ki6m0zQ6eQiGyjdjtuQWU5U5UntVXvtMlsy7IKRqVzRG/s1600/photoDAADA.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsladAXGnI0kZmkDfIAviYk7qWm5x8pGslKK_lLqxG74fj5_-7n4Q8VimJrIleo_TXdC3PelYYz7Nou3mMz3iKrBWXi1U4Ki6m0zQ6eQiGyjdjtuQWU5U5UntVXvtMlsy7IKRqVzRG/s1600/photoDAADA.JPG" width="320" /></a></span></li>
<li><span style="font-size: large;">As I said there has been a lot going on and this is only a brief catch up. All goes well with Cristina - probably looking at mid February for her birth. Maria is doing an impression of the Goodyear Blimp and all tests are looking good. </span></li>
<li><span style="font-size: large;">The Twitter account now has 41,500 followers and interest is as strong as ever. We are as grateful as ever for the support. We still get daily messages asking what SMA is - and that pleases me - my theory is that every person we tell can possibly become an advocate and there are some amazing people out there. </span></li>
</ul>
<span style="font-size: large;"></span><br />
<span style="font-size: large;"></span><br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4831070856258014656.post-13658413904987128502012-09-09T09:09:00.001+01:002012-09-09T09:09:44.299+01:00STARS and BRASAs we get ready for the serious business of the SMASHSMA reception with Nick Clegg at the House of Commons there is a bit of other business going on that may raise the profile of Spinal Muscular Atrophy even higher.<br />
<br />
We decided early on in this campaign that if we were going to alert people to this dreadful disease not everything could be about the disease itself. To capture attention , imagination and inspiration you sometimes have to appeal to senses other than empathy.<br />
<br />
We could not have a better example than the wonderful celebrity art bra auction that will take place later this year.<br />
<br />
First of all let's introduce you to the splendiferous Linda Kirkbride @lindakirkbride1<br />
<br />
<a href="http://www.etsy.com/people/lindakirkbride1?ref=owner_profile_leftnav">LINDA and HER ART BRAS</a><br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMgbrpomRHJPK3kscQpuauFbaRgmcOzAT2PIGJQKguX2_Ke_gBaC7re-iZQwdxeOjXTftP7q9vy6Bs1UpOGgBU7Wq8aU5HSDoHqLvEgrWDZAjInUD-grtt-7abBdgCkEfCNSd0g72A/s1600/image.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMgbrpomRHJPK3kscQpuauFbaRgmcOzAT2PIGJQKguX2_Ke_gBaC7re-iZQwdxeOjXTftP7q9vy6Bs1UpOGgBU7Wq8aU5HSDoHqLvEgrWDZAjInUD-grtt-7abBdgCkEfCNSd0g72A/s320/image.jpg" width="304" /></a></div>
<br />
<br />
<br />
<br />
Linda came up with the idea of creating a bra that could be auctioned to raise money for the official SMASHSMA charity at Edinburgh University.<br />
<br />
<a href="https://edinburghuni.workwithus.org/Fundraising/Donate.aspx?page=7182">SMASHSMA CHARITY DONATIONS PAGE</a><br />
<br />
<br />
She had made the bras before themed around the charity that she was supporting. Straight away it was suggested that the theme would be STARS - Linda set to work getting her materials and we started to think about how to get the highest possible donation.<br />
<br />
As you know we have had amazing support ( no pun intended ) from celebrities ever since Estella died last November. Just this week Tom Cruise tweeted her details to millions of people. It made sense then that if we could get a celebrity to model the bra then this would raise the profile of SMA and at the same time increase the bids that we would get towards research.<br />
<br />
So off we went to Natalie Cassidy who has been amazing since her first tweet about Estella.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoAN_E9JNChV9cSdr4bknZs6GbUAesFF3xCefrJ4tpSLE8G3r4eoTBcahlErK85_Rqdpx2HJzuUBtEsO7oPTOonjTUig8KBJfw-NpFY4ECnJ4-egUYEAMSkhb0vIaMkaWsR-xIQTYw/s1600/natalie-cassidy-02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoAN_E9JNChV9cSdr4bknZs6GbUAesFF3xCefrJ4tpSLE8G3r4eoTBcahlErK85_Rqdpx2HJzuUBtEsO7oPTOonjTUig8KBJfw-NpFY4ECnJ4-egUYEAMSkhb0vIaMkaWsR-xIQTYw/s1600/natalie-cassidy-02.jpg" /></a></div>
<br />
<br />
<br />
I asked if she knew anybody who may model the bra ( secretky hoping that she would say that she would ) - Natalie came back though with another suggestion - and that's how we met Nicola Mclean.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWYj9Bz2felN86M6WNiwgyq1UQV-uyk8u_VF32eHjVhbl7JqXEdVII8fQqUvlOqhRf43vuhGiCBZOlV0wWPaZn9fjUR9dP8ku1wWIa2aTJzy02IUlnJIzHfKQq8QubjZPjxbCaaBZG/s1600/imgNicola%2520Mclean2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWYj9Bz2felN86M6WNiwgyq1UQV-uyk8u_VF32eHjVhbl7JqXEdVII8fQqUvlOqhRf43vuhGiCBZOlV0wWPaZn9fjUR9dP8ku1wWIa2aTJzy02IUlnJIzHfKQq8QubjZPjxbCaaBZG/s320/imgNicola%2520Mclean2.jpg" width="213" /></a></div>
<br />
<br />
Nicola has been fantastic and straight away said taht she would be the model for the charity art bra. One of her bras is currently winging its way to us so that Linda can start work with the arty side of the project. Linda has not only been so supportive and enthusiastic she has also managed to get us hundreds of followers with her retweets. She has also spread the word among other celebrities who are also retweeting for our little Tinker, Estella. An amazing lady - please follow her on Twitter @mrsnicolamclean<br />
<br />
So there we have it. Sometime before the end of the year Nicola will be modelling the bra and we will be holding a charity auction. There is talk of Linda making more bras for more celebrities as well and we are being followed by two excellent candidates in Natasha Giggs and Heather Bianchi<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq1vhHkdQscOBmsmzdbL_P-Ae8_n_aH3_jqk8kJvAe53jvY0G6u_-KmBPdADqJj20RI2Hz2JS-XUutDQGF4LYz3Xs26Ouv4k9ujLfTXeZoYvwauw9trVm59fWCzLo54YOTu4GT952E/s1600/u2_Natasha_Giggs-indiavision-com.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq1vhHkdQscOBmsmzdbL_P-Ae8_n_aH3_jqk8kJvAe53jvY0G6u_-KmBPdADqJj20RI2Hz2JS-XUutDQGF4LYz3Xs26Ouv4k9ujLfTXeZoYvwauw9trVm59fWCzLo54YOTu4GT952E/s1600/u2_Natasha_Giggs-indiavision-com.jpg" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6lZOodQU-HEO9WxzE3gLZV640AR8CzdvwcF4C6YMklUta4VUGWKYznykmf9Mkw0Oe23vwx9KV6Swvj3DBIwd_3PxE21u-3KW_A_fLDNdx2hRAPQYMC7E-XsJe2y8jTh-8AnaRhnx0/s1600/zheather2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="198" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6lZOodQU-HEO9WxzE3gLZV640AR8CzdvwcF4C6YMklUta4VUGWKYznykmf9Mkw0Oe23vwx9KV6Swvj3DBIwd_3PxE21u-3KW_A_fLDNdx2hRAPQYMC7E-XsJe2y8jTh-8AnaRhnx0/s320/zheather2.jpg" width="320" /></a></div>
<br />
Two more celbrities who mention Estella a lot. <br />
<br />
I can never say how gratteful I am for all of this enthusiasm and commitment from celebrities who are going the extra mile to alert people to the number ONE genetic killer of babies. There are some superb people about and I know that Estella would have had a cheeky smile for all of them.<br />
<br />
OK - anybody want to start the bidding for a CELEBRITY SMASHSMA BRA ?<br />
<br />
Thanks Nat - You are unbleievable. <br />
<br />
and Nicola - you're an Angel<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipobHyhFiIfEggSjUlT7O666SjXd__gy9whwORoi33s-g1EnSSBktP6EJXLgniJGpUKQzl8NEMUp_-zbjSXiUodLjXns9_X-aokmPKRADSOe_zsq61_jQEQxYAoWH3qvb4X20qaBX8/s1600/Nicola-Mclean-71.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipobHyhFiIfEggSjUlT7O666SjXd__gy9whwORoi33s-g1EnSSBktP6EJXLgniJGpUKQzl8NEMUp_-zbjSXiUodLjXns9_X-aokmPKRADSOe_zsq61_jQEQxYAoWH3qvb4X20qaBX8/s320/Nicola-Mclean-71.jpg" width="218" /></a></div>
<br />
<br />
<br />
<br />
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4831070856258014656.post-61590406265107381032012-08-24T14:50:00.000+01:002012-08-24T14:50:26.884+01:00LONDON CALLINGSeptember 18th will be an important date in the fight against Spinal Muscular Atrophy.<br />
<br />
We have a confirmed House of Commons reception with Nick Clegg, the Deputy Prime Minister from 6 pm - 8 pm that evening. This follows a constructive meeting we had with the Deputy PM earlier this year.<br />
<br />
This is an opportunity to<br />
<br />
<br />
<ul>
<li>Explain what SMA is</li>
<li>Explain that 1 in 40 of people carry the disease</li>
<li>Highlight the support and research that surrounds SMA in the UK</li>
<li>Stress the need for awareness and how screening could improve the options available to parents</li>
</ul>
<div>
Morrison Facilities Services have been tremendous friends to the SMASH SMA cause and they will be sponsoring the reception. Natalie Cassidy will attend to add celebrity weight to the message.</div>
<div>
<br /></div>
<div>
The most important thing now is to ensure that as many MPs as possible attend the reception and that is where you come in. </div>
<div>
<br /></div>
<div>
It would be terrific if you would email the Member for your area to ask if they would attend the reception. I have put the suggested wording below.</div>
<div>
<br /></div>
<div>
<br /></div>
<div>
Dear .............</div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<div align="center" class="MsoNormal" style="line-height: 150%; text-align: center;">
<b><span style="font-family: Cambria; font-size: 22.0pt; line-height: 150%; mso-bidi-font-family: Calibri;">Spinal Muscular Atrophy
Awareness Reception<o:p></o:p></span></b></div>
</div>
<div>
<br /></div>
<div>
I am writing to inform you that a reception is being held in the Macmillan Room of Portcullis House on Tuesday 18th September from 6 pm - 8 pm. The reception is being hosted by the Deputy Prime Minister, Nick Clegg.. The reception is to raise awareness of Spinal Muscular Atrophy (SMA). </div>
<div>
<br /></div>
<div>
<ul>
<li>SMA is the number one genetic killer of babies in the UK</li>
<li>1 in 40 adults are SMA carriers</li>
<li>If both parents are SMA carriers then their baby stands a 1 in 4 chance of having SMA</li>
<li>A simple genetic test would alert parents if they were carriers</li>
</ul>
<div>
<br /></div>
<div>
The evening has been organised by Nick Clegg following a meeting with two parents who approached him following the death fo their daughter in November 2011. Estella Sweetman-Lopez was 8 months old when she died from SMA</div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigPWgg5cTOhu4VnRLzP-8ehrgvhELKz_Edc-UJZOfGTOVwWSYwEiiTH7ENRx9pozDJcA84wNN8YGN-eQUcGw-ZzicuLzX2D6f7kqpoHI5pqpPzaNKoZ_vVNXCPjCeqapESzCAmRhwP/s1600/photo4324.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigPWgg5cTOhu4VnRLzP-8ehrgvhELKz_Edc-UJZOfGTOVwWSYwEiiTH7ENRx9pozDJcA84wNN8YGN-eQUcGw-ZzicuLzX2D6f7kqpoHI5pqpPzaNKoZ_vVNXCPjCeqapESzCAmRhwP/s320/photo4324.JPG" width="240" /></a></div>
<div>
<br /></div>
<div>
<br /></div>
</div>
<div>
Estella's parents have worked tirelessly to raise awareness of this disease. They have </div>
<div>
<br /></div>
<div>
<ul>
<li>35,000 followers on Twitter and Facebook</li>
<li>Raised over £ 40,000 towards SMA research</li>
<li>Had national newspaper coverage for their SMASH SMA campaign</li>
</ul>
<div>
I have followed and supported their campaign closely and would be very grateful if you would attend this reception on behalf of myself and the parents who have been affected by this disease from within your constituency. Research suggests that the cure for SMA may be very close - and it is the UK that stands a very good chance of unlocking the genetic solution. How wonderful if this campaign resulted in a cure being found for the number one genetic killer of babies.</div>
</div>
<div>
<br /></div>
<div>
For more details of the background to Estella please look at these two links. The first one is a moving video that has been seen by over 50,000 people. The second gives details of Estella's life. . </div>
<div>
<br /></div>
<div>
<a href="http://www.youtube.com/watch?v=34RmmLWhr80">http://www.youtube.com/watch?v=34RmmLWhr80</a></div>
<div>
<br /></div>
<div>
<a href="http://www.bluebellwood.org/estella.php">http://www.bluebellwood.org/estella.php</a></div>
<div>
<br /></div>
<div>
I know that if you look at the information you will understand the importance of supporting this tremendous cause. May I thank you in anticipation for your support in raising awareness of a disease that could affect any one of your constituents</div>
<div>
<br /></div>
<div>
<br /></div>
<div>
YOUR NAME XXXXXXXXXXXXXXXXXX</div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
Please take a moment to send that to your MP</div>
<div>
<br /></div>
<div>
You can find their details here</div>
<div>
<br /></div>
<div>
<a href="http://findyourmp.parliament.uk/">http://findyourmp.parliament.uk/</a></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
Last thing for this blog.</div>
<div>
<br /></div>
<div>
I mentioned Morrison and their support of the SMASH SMA campaign. Just look at this tremendous sign that they have put in at Rotherham United's new stadium for the forthcoming season. They have been tremendous supporters and could not have been kinder.</div>
<div>
<br /></div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-rMNGxC_uYApHanO3kKPx6N35aDzaWrFpZ7AKU-fY07_LXpW5cBQd2i3GZGz9hNZAjBksbAo8QY6JTtQ6vRFGnmwy2Rhg5URVxB-Tz6b8WWguYyTViBKEPg7lTpPJdKXwBzARLqYh/s1600/photo.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-rMNGxC_uYApHanO3kKPx6N35aDzaWrFpZ7AKU-fY07_LXpW5cBQd2i3GZGz9hNZAjBksbAo8QY6JTtQ6vRFGnmwy2Rhg5URVxB-Tz6b8WWguYyTViBKEPg7lTpPJdKXwBzARLqYh/s320/photo.JPG" width="320" /></a></div>
<div>
<br /></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4831070856258014656.post-33479951758005033612012-08-15T15:06:00.001+01:002012-08-15T15:06:24.099+01:00KATIE FUTURE STAR<br />
<div class="MsoNormal" style="margin-bottom: 16.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<b><span lang="EN-US" style="font-family: Times;"><br /></span></b></div>
<div class="MsoNormal" style="margin-bottom: 16.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<b><span lang="EN-US"><span style="font-family: Times;">As part of our support of the Gillingwater-Parson research work we were delighted when a scholarship was set up in Estella's name. We were even more delighted to receive this report from Katie Hoban detailing her work within this innovative environment. This is Katie's report </span></span></b></div>
<div class="MsoNormal" style="margin-bottom: 16.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<b><span lang="EN-US" style="font-family: Times;"><br /></span></b></div>
<h2>
<b><span lang="EN-US" style="font-family: Times;">Estella
Star Scholarship Report</span></b></h2>
<div class="MsoNormal" style="margin-bottom: 16.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="font-family: Times;">Having
just completed my BSc degree in Neuroscience and looking forward to beginning
my training to become a medical doctor at the University of Edinburgh, I was
keen to spend time in a scientific research laboratory. I am particularly
interested in the way in which basic research will inform my future clinical
practice and when I saw the advert for the Estella Star Scholarship I
immediately applied. I was delighted upon hearing I had been awarded the
scholarship and the chance to work in a leading SMA research laboratory. My
project was to be supervised by Dr Simon Parson and entitled “The role of the
vascular system in Spinal Muscular Atrophy’.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 16.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="font-family: Times;">You may be
surprised that I was not to work on motor neurons, but instead the vascular
system. This is because it is becoming
increasingly apparent there are other key targets, such as the heart and blood
vessels, in the disease as well as the characteristic muscle atrophy. Previous
research in the laboratory shown the amount of blood vessels in muscle is
dramatically reduced in mouse models of severe SMA. My project was to
investigate the blood supply to the spinal cord (where motor neurones are
found) and nerve (which connect the motor neurons to muscle). First we carried
out a detailed analysis of normal tissue upon which to base future SMA studies.
I learnt new techniques to isolate specific tissues, prepare them for
microscopy, stain them to highlight blood vessels and then quantify the amount
of blood vessels present. This was challenging at first, but with help from the
other students in the laboratory I soon became proficient and was able to
collect data. We found that the newborn spinal cord was sparse of blood
vessels, but steadily increased over the first few weeks of life. We
specifically noted changes in the part of the spinal cord where motor neurons
are found. Peripheral nerves were much better supplied with blood vessels at
birth. This is important as defects in blood supply to either of these regions
could have catastrophic consequences for motor neurons. I presented this data
at a recent symposium on Motor Neurones and Diseases of Motor Neurones, and
hope to submit it for publication later this year. Finally we began to assess
tissue from mice which model severe SMA and found some potentially very interesting
results, but these are too preliminary for us to publicize yet, so watch this
space!<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 16.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="font-family: Times;">Working in
a hospital environment in recent months has highlighted the fact there are
patients in urgent need of therapies for currently incurable diseases. To be given
the opportunity by your incredible Estella Star fundraising efforts, allowed
me, in a small way, to add to current research. When previously speaking to you
both during your visit to the lab, I was struck by your profound dedication and
personal commitment to heighten the profile of SMA and I vowed that by the end
of my placement, I would be able to report new developments which would provide
a platform of information to help further understand the disease pathology of
SMA.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 16.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="font-family: Times;">I will
make it my utmost effort to follow the progress of the Gillingwater-Parson lab
because I sincerely believe that they are at the cutting edge of scientific
research and with the advances to date, we are en-route to answering many of
the unresolved questions in SMA and together with your fantastic fundraising
efforts, are another step closer to SMASH SMA.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 16.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span lang="EN-US" style="font-family: Times;">I can only
thank you for this unique opportunity and have nothing but respect for your
dedication to help us find treatments to the fatal disease that is SMA.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 16.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span lang="EN-US" style="font-family: Times;">Katie
Hoban</span></i><a href="" name="_GoBack"></a><span lang="EN-US" style="font-family: Times;"><o:p></o:p></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4831070856258014656.post-83461103055785326102012-08-09T10:45:00.001+01:002012-08-09T10:45:52.373+01:00FIRST STAR I SEE TONIGHTThey say a picture says a thousand words. Well here's my novel.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk14qs_bBOsq_jD6Y5uBjC_vUDMVjDsZSnSUVCqpGM14-j0MsqkWbaGwW1K1FBlBmyAPrlMCfAze-7ipvfwE6g0k-OrhR1cVCopOpXoiewEXo6I64hIQqKmqgNqfWPRrYMcih8-PwX/s1600/IMG_1897.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk14qs_bBOsq_jD6Y5uBjC_vUDMVjDsZSnSUVCqpGM14-j0MsqkWbaGwW1K1FBlBmyAPrlMCfAze-7ipvfwE6g0k-OrhR1cVCopOpXoiewEXo6I64hIQqKmqgNqfWPRrYMcih8-PwX/s320/IMG_1897.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEit3c3mp8u6d_9dir8RB4RFypNlgYniwlGiRbyv__OzbIECWPu17ARZW_L8L2x9DRtPAxyloaECJx7f3R-UcY2lCHHmHl-5bqlx-gC2Rbb9WDqtPUi_YkWtd6czz7SwsgDQivILpAz4/s1600/IMG_0534.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEit3c3mp8u6d_9dir8RB4RFypNlgYniwlGiRbyv__OzbIECWPu17ARZW_L8L2x9DRtPAxyloaECJx7f3R-UcY2lCHHmHl-5bqlx-gC2Rbb9WDqtPUi_YkWtd6czz7SwsgDQivILpAz4/s320/IMG_0534.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht0V4M9g2U-saJau3kvqcOHtw6E5DIW1BT_xaRnr3nV7gThhEvOFOVykT8P3quMnUIaoMsSDkWqOVwHy7izFE6Q1LcSCT7T14nqpwsT2KbhA0PnKLmpp1JSCksBJ0IIrSmcMJ5gbmc/s1600/IMG_0253.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht0V4M9g2U-saJau3kvqcOHtw6E5DIW1BT_xaRnr3nV7gThhEvOFOVykT8P3quMnUIaoMsSDkWqOVwHy7izFE6Q1LcSCT7T14nqpwsT2KbhA0PnKLmpp1JSCksBJ0IIrSmcMJ5gbmc/s320/IMG_0253.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2A8jJNH3rOn0BLuKSClS8BmJ8JmC9W_AU7ReOwjW3vlwZCsRympgucJry65rBQiGGq8OsptH9UnBjZRuFbikioPjjsrUsmc2e2nTMHkWvcZ-1KiU6lrIWkW0cZGpMw81ed-CV7rAI/s1600/IMG_0443.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2A8jJNH3rOn0BLuKSClS8BmJ8JmC9W_AU7ReOwjW3vlwZCsRympgucJry65rBQiGGq8OsptH9UnBjZRuFbikioPjjsrUsmc2e2nTMHkWvcZ-1KiU6lrIWkW0cZGpMw81ed-CV7rAI/s320/IMG_0443.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzSuFxjwZvwVvTdgqcNQDcwqPk2RsNszlVujtWG65Wk4Qjpx3ovw93hHNQEFKRwy4Ik1jQ_r40tbOOTARaijF3IkLMZK-ANGdV7jocxV7ZbXJZ_QdFLc7F4KhcqFrbIvJSY3ObHQzN/s1600/IMG_1617.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzSuFxjwZvwVvTdgqcNQDcwqPk2RsNszlVujtWG65Wk4Qjpx3ovw93hHNQEFKRwy4Ik1jQ_r40tbOOTARaijF3IkLMZK-ANGdV7jocxV7ZbXJZ_QdFLc7F4KhcqFrbIvJSY3ObHQzN/s320/IMG_1617.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC9DTTPWuKr7AQP_iRbLvzHSLnG1XZik-7On21j_Ps-wMZ8mXkhFm6kYEA61NId8neAFC1TKKHg5TXYwkoz3OgJTZWEDkctxRN1um7YOLZ9K2wYedCZVzaOi2rr2Zjq0QY00rtz7w4/s1600/IMG_0561.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC9DTTPWuKr7AQP_iRbLvzHSLnG1XZik-7On21j_Ps-wMZ8mXkhFm6kYEA61NId8neAFC1TKKHg5TXYwkoz3OgJTZWEDkctxRN1um7YOLZ9K2wYedCZVzaOi2rr2Zjq0QY00rtz7w4/s320/IMG_0561.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSmtDk9zOa8fcmScMuR9BZd0vFHWxcdXiRm2fE-cVL3ShhXDMyodkq4eFx5QsC1z6iL8dNVMHB_aWzeTlwfz9fMk9D0glXbeFrNsO72KHuek-L0QqKwOyuH7OytBlA1w2J16lGJ9nq/s1600/IMG_2321.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSmtDk9zOa8fcmScMuR9BZd0vFHWxcdXiRm2fE-cVL3ShhXDMyodkq4eFx5QsC1z6iL8dNVMHB_aWzeTlwfz9fMk9D0glXbeFrNsO72KHuek-L0QqKwOyuH7OytBlA1w2J16lGJ9nq/s320/IMG_2321.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZP2pHvM2myKZULoz0e_I7N5oy-LwJwLQcAqLtq8pk8fMjvZJ60udXxEANIIqeyf0zgxCmtXHUC8Cw2HtpNoFiDUBRaecYiJ5LGl21_gJufrGSH31TeUtV8W7wTnAgfQo4J3wPy0XT/s1600/IMG_1618.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZP2pHvM2myKZULoz0e_I7N5oy-LwJwLQcAqLtq8pk8fMjvZJ60udXxEANIIqeyf0zgxCmtXHUC8Cw2HtpNoFiDUBRaecYiJ5LGl21_gJufrGSH31TeUtV8W7wTnAgfQo4J3wPy0XT/s320/IMG_1618.JPG" width="320" /></a></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4831070856258014656.post-50516399612197577402012-08-04T15:57:00.003+01:002012-08-04T16:10:22.202+01:00STRAWBERRIES, CHERRIES and AN ANGEL'S KISS IN SPRING<h2>
For everything there is a season and a time for every purpose... under heaven</h2>
<br />
Following the death of our daughter , Estella, last November I knew two things. I knew that I had to do what I could to alert the world about SMA and I knew that Maria had to one day become a Mummy again.<br />
<br />
I'm OK at this Daddy lark. I have my moments but Maria is a natural. She cared for Estella with such love and devotion and ever since we had to say goodbye to her I have seen a Mummy who has had her soul and heart ripped away. It was essential that this devotion should have a child to be bestowed on.<br />
<br />
We had made our peace with a number of things during those sad, beautiful, tortured, memorable days that Estella was dying. I had sat by her bed and explained to her that although we would want another child they would never replace my Tinker in my heart. I asked her permission to let life carry on and asked her to give signs that she was OK. Of course there was guilt with wanting another child - of course there have been moments when I have asked if it is fair. Of course Estella was my cheeky monkey.<br />
<br />
We were originally going down the IVF route. By doing that we could guarantee that our next child would not be cursed with SMA. After a couple of months of discussion though we decided that the odds were low and that the route had its own problems. So in May we decided to go for the natural method and to hope ...<br />
<br />
And that's what we did.<br />
<br />
The odds were in our favour but still amazingly scary.<br />
<br />
By the natural method there would be a 1 in 4 chance that a new baby would have SMA<br />
There would also be a 2 in 4 chance that the baby would be a carrier of SMA<br />
<br />
Then things got worse<br />
<br />
Maria was told that her reserves were low. On the score system they use she needed to be 16 and above to be fertile. She was a 2.<br />
<br />
Maybe all options had gone<br />
<br />
Within three weeks of trying Maria told me one morning that she was pregnant.<br />
<br />
And then the waiting began<br />
<br />
At first the wait was OK. We knew that the odds were probably in our favour and rested on that but as time went on we started to worry more. Maria told me every morning how big the baby was a pea, a bean, a cherry, a strawberry and she was also being incredibly sick.<br />
<br />
This was becoming real<br />
<br />
No test can be done on the placenta DNA until the 11th week. When that test is done the result takes about another week. We were clear - if this was SMA then we would have very difficult decisions to make. If we chose termination it would be done within a day or so.<br />
<br />
The problem was though that we had already seen the little bump twice on a scan.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlHjzXJBb2uYsKaRe_oGVNSx_3gA-X4H7ofmipq56C4JSEXwTA3du8FSQ6-hkG7aI1B2zjQpImordSAiAG9Am-Lj5dDjiD9-o3TQx3aOsdXW2vhvmYQl4mELs5dJ5FGUv0xHQvNjgd/s1600/photo.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="251" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlHjzXJBb2uYsKaRe_oGVNSx_3gA-X4H7ofmipq56C4JSEXwTA3du8FSQ6-hkG7aI1B2zjQpImordSAiAG9Am-Lj5dDjiD9-o3TQx3aOsdXW2vhvmYQl4mELs5dJ5FGUv0xHQvNjgd/s320/photo.JPG" width="320" /></a></div>
<br />
<br />
The shape was very clear. The hands , the legs, the head and the beating heart.<br />
<br />
Last Tuesday we went to do the examination that would decide the future. While they took their sample through a very big needle poked into Maria's tummy the bump was kicking its legs and waving. I sat watching and saw it wave. I thought it was waving goodbye.<br />
<br />
We knew that we had to wait until the following Tuesday for the result.<br />
Yet this Friday morning when we woke up ( yesterday ) we knew that this would be the day.<br />
<br />
Maria received the phone call at work and rang me.<br />
<br />
It was healthy and it was a girl.<br />
<br />
And in that moment the rooms and the conversations and the tubes and the held hands and the smiles and the heart stopping moments and the bluebells and the songs and the rhymes and the tears and the goodbyes and the decisions and the revisions and the nights and the bent knee prayers and the cuddles and the dreams and the dragons and the lights and the dawn and the last gentle touch of her gorgeous hand - in that moment all the moments became a moment.<br />
<br />
and I felt nothing but calm.<br />
<br />
We are going to have a baby girl next February. The baby will arrive on , or around , Estella's birthday.- if there's anything that tells me that Estella is cool with that then that is the fact.<br />
<br />
When Estella was very ill Maria made her a very fanciful promise. She said that we were sorry that we had made her a body that was so little and beautiful but did not work. She said that we would go away and build her a little body that did work.<br />
<br />
and we're not stupid and we're not deranged we know that this is a new baby and we know it's got its own personality and its own ways - we know that it's not Estella - but I tell you this - when she raises an eyebrow at my singing or smiles when I cry then maybe , just maybe the world will stop for a second and we can all remember our greatest human achievement - the capacity for wonder.<br />
<br />
We are happy beyond words<br />
<br />
For clarity though<br />
<br />
The fight against SMA was never about us, or Estella<br />
<br />
It was about the generations yet to come.<br />
<br />
This baby has not got SMA - we got lucky<br />
<br />
But as long as there are babies who are born with this horrendous disease I'm gonna keep telling people about it. I'm going to complete wish number two.<br />
<br />
Wish number one - Maria will become a Mum again ( box almost ticked )<br />
Wish number two - SMASH SMA - still working on it<br />
<br />
Last thoughts<br />
<br />
I'm about to go on a great adventure. At the end of the rainbow I become a Daddy again. Tomorrow morning though I am going to see Tinker and I am going to thank her<br />
<br />
and I am going to take her a toy<br />
<br />
and I am going to tell her that I love her more than anything in the whole of creation<br />
<br />
Because I have to take care of her<br />
<br />
Because she takes care of me<br />
<br />
Fair<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuEF4HsRsmNKAEwXERZYTOapuB11rTn3xzjxU0Yn1LAAWMC3Q81707MIMVBaBUQMK9ZDAWey6JYuaR8UGmLnJZ6y55iaIQUe8ioBBRhKogwHx9zy36Qg2fc-_EmdnecigVF2JKFwNl/s1600/photo.GIF" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuEF4HsRsmNKAEwXERZYTOapuB11rTn3xzjxU0Yn1LAAWMC3Q81707MIMVBaBUQMK9ZDAWey6JYuaR8UGmLnJZ6y55iaIQUe8ioBBRhKogwHx9zy36Qg2fc-_EmdnecigVF2JKFwNl/s320/photo.GIF" width="228" /></a></div>
<br />
<br />
<br />
PS<br />
<br />
There are a couple of people reading this that I want to say sorry to. One of the hardest parts of the last 9 weeks has not being able to tell them what was happening or ask their advice or seek their support. I hope they understand.<br />
<br />Unknownnoreply@blogger.com9tag:blogger.com,1999:blog-4831070856258014656.post-5380752448431158692012-07-19T10:16:00.003+01:002012-07-19T10:16:32.326+01:00SWEET TWEET FEAT is NEATThis isn't a post as such it's just an explanation of something that is bothering me. recently I have posted a number of tweets that say something like - " 95 % of Twitter users do not retweet for @estellastar1 - but the 5 % who do are amazing."<br />
<br />
This tweet has had the result of losing many followers and I have had a number of people saying that they don't like it.<br />
<br />
I totally understand that.<br />
<br />
But<br />
<br />A normal tweet has on average 30 people retweeting it and picks up about 6 new followers.<br />
<br />
The tweet above has been retweeted 2,588 times and has picked up 1,844 new followers.<br />
<br />
I know that is simplistic and that a quality follower is worth 500 temporary ones but my message on Twitter is to spread awareness about SMA - doing it this was means that the 6 tweets I have done this way have been seen by around 10,000 people.<br />
<br />
It's not right maybe - but it's certainly not wrong<br />
<br />
Hope that makes sense.<br />
<br />
Major post coming soon <br />
<br />
<br />
Thanks for reading <br />
<br />
Tom<br />
<br />
xxxUnknownnoreply@blogger.com5tag:blogger.com,1999:blog-4831070856258014656.post-55799633784618066942012-07-01T08:18:00.001+01:002012-07-01T08:18:39.117+01:00CELEBRITY FORTUNESThis is a blog I have been thinking about writing for a while.<br />
<br />
It's not a sad one - it's not particularly about Estella<br />
<br />
Well, in a way it is.<br />
<br />
One of the things I have noticed on Twitter is how annoyed some people get when they can not get celebrities retweeting them.It usually starts with tweets asking for retweets and then ends with an outburst about how celebrities could not care less.<br />
<br />
Let's think about this a minute.<br />
<br />
We seem to have this concept that celebrities are all rich and famous and should be conscious all the time that they are 'lucky' to be in the public eye - as such they should be tweeting about good causes all day long.<br />
<br />
Why should they ?<br />
How could they ?<br />
<br />
They are all people and all very different people.<br />
<br />
We have 26,000 followers on Twitter and a lot of that was down to the fact that one very nice American lady knew Stephen Fry and he tweeted about Estella. The time line went crazy and I remember being in tears as hundreds of people got to hear about Estella. It was amazing.<br />
<br />
Stephen Fry himself said that seeing one tweet out of the thousands that he gets every day is like seeing a snowflake in a blizzard.<br />
<br />
So there's the first answer - quite often the celebrity does not even see the tweets.<br />
<br />
To get round this to start with we had snowstorm hours - calls to action to tweet a celeb all at the same time. I remember Mia Farrow doing us a retweet when we shut down her time line - effective but not the best way to win friends and influence people. I think she was rather cross :)<br />
<br />
Anton Ferdinand came across us and retweeted and we picked up hundreds. One night he asked his brother ( the man who should still be England captain ) Rio to tweet and it went crazy. We received 2,000 new followers in the space of an hour. It was an amazing evening.<br />
<br />
<br />
Just lately we have been lucky enough to meet with Natalie Cassidy. Natalie saw Estella's video because her neice rang her and told her she should watch it. The support we have had since is for one reason only - Natalie is a Mum , and an extrordinairily good one , she was touched by Estella and has taken SMA under her wing with regular tweets, a Sunday People article and more care and love than you could ever believe.<br />
<br />
Maybe that's the answer. A lot of the celebrities who have supported us are Mums or ones who have had their own experiences in life that have taught them the value of support and thought. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj994eevE_cqQ-OHiGZXBo4kTlniTYgeTuuNCB041niRODdNsz-aCv8Hc32mI451XMsJjHsx9PhEI9Qd-19vR9oPoi2VP0SAIDd_uh7LlXToL_QLR5yFPANTmYuvJ-IVfYkHX2ae9Gr/s1600/09227_144228_55302151.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj994eevE_cqQ-OHiGZXBo4kTlniTYgeTuuNCB041niRODdNsz-aCv8Hc32mI451XMsJjHsx9PhEI9Qd-19vR9oPoi2VP0SAIDd_uh7LlXToL_QLR5yFPANTmYuvJ-IVfYkHX2ae9Gr/s1600/09227_144228_55302151.jpg" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
We have had dozens of celebrity retweets about Estella. As soon as they see the video ( which has now been viewed by over 45,000 people ) they get it and they are so wonderful.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Last week we had several retweets from another actress. The difference this time is that she is actually a star in the adult film industry in America. I had two tweets asking if it was such a good idea to be retweeted by her. All I can say is that she wanted to spread the word about SMA and she was touched by Estella's story - so the answer is obvious. She's a very caring person and we are proud that she gets Estella - so thanks for so much support to the amazing Sophie Dee.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDbKQ4nG584n6DV-MpOKWkTYzUXFADXoRHwI4YwqQd8tRXmZqzvQl8cTd2uFQVkAYEieLBbJ4eh-W851Vf-Dq6ZhGdFWcLZxI5JUdKJLLBHQk8W3tZhWr7MAuZQFVhnp92Dl66lP95/s1600/tumblr_lxsz9fF2Wr1r8w245o1_500.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="316" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDbKQ4nG584n6DV-MpOKWkTYzUXFADXoRHwI4YwqQd8tRXmZqzvQl8cTd2uFQVkAYEieLBbJ4eh-W851Vf-Dq6ZhGdFWcLZxI5JUdKJLLBHQk8W3tZhWr7MAuZQFVhnp92Dl66lP95/s320/tumblr_lxsz9fF2Wr1r8w245o1_500.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: left;">
</div>
<br />
<br />
Last Sunday we also had terrific support in Direct Messages from the ever wonderful Gail Porter. She retweeted us and won us so many new followers.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_LaXOrMllOm2akhDgqweZcw_N8BOMFpEjvy1oNAMWv9Y38VWvm1BsvwSU6WnX4yg1Ez3vnKgEQ28IhOo3IkNzzOuomzNNfL8DBc812JZiB0bUA_cYBJFqX6Izu_tJzQc29bGuIsJN/s1600/50229-gail-porter-1910070555-0003-122-820lo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_LaXOrMllOm2akhDgqweZcw_N8BOMFpEjvy1oNAMWv9Y38VWvm1BsvwSU6WnX4yg1Ez3vnKgEQ28IhOo3IkNzzOuomzNNfL8DBc812JZiB0bUA_cYBJFqX6Izu_tJzQc29bGuIsJN/s320/50229-gail-porter-1910070555-0003-122-820lo.jpg" width="267" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
So that's my thoughts this fine Sunday morning. No tears today. No calls to action just a thankyou to the celebrities who have been touched by Estella and her little life.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I'm biased - I know that Estella herself wins them over with her eyes and her spirit and her charm. If you are here reading this then you already know that.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
There are a couple that we just have not been able to get Ed Sheeran and Jessie J must have had a million tweets but remember about the snowflake in the blizzard - one day a smile from Estella will land on their radar and BOOM - SMA will get another kicking.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I want to end with just one more thought.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I am sure a lot of celebrities don't like the word. They are very much normal people who are also touched by sorrow and pity and tears and regret. </div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
By the same token there are so many of you following Estella who would never think of yourselves as celebrities. Never think of yourself as important or famous.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
I tell you this</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
We are going to put an end to this disease that took my daughter. We are going to pick away at it. We are going to shout at it. We are going to kick it.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
We are going to smash it</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
And when we do there will be no more babies born who already have their days numbered in months rather than decades</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
And when we do there are going to be no more Muppet Daddies struggling to read nanite stories through tear soaked eyes</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
And when we do there will be no more families who have to sit in that room holding the cold hand of their little treasure and kissing her forehead one final time before lifting and carrying her to her final sleep.</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
and when that happens every tweet, every retweet, every donation, every promise , every smile, every wish, every shout out , every Follow Friday , every tear will all be worth it. Small random acts of kindness</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Like snowflakes</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
That make a blizzard</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
That make you all celebrities</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Crying in the snow for one little snowflake who never saw her Winter</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
Let it snow</div>
<div class="separator" style="clear: both; text-align: left;">
Let it snow</div>
<div class="separator" style="clear: both; text-align: left;">
Let it snow</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
You didn't really think I was going to let you get away without a little sob did you :)</div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
</div>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-4831070856258014656.post-56111822910595734642012-06-17T08:16:00.001+01:002012-06-17T08:16:10.409+01:00FATHER'S DAY - A LETTER TO ESTELLAEstella<br />
<br />
Good Morning Tinker.<br />
<br />
Muppet Daddy here.<br />
<br />
Don't worry I'm not going to sing Puff the Magic Dragon, The Runaway Train or Twinkle Twinkle Little Star. I'm not here to tickle you and I won't pull any of those silly faces . I'm not even going to make you listen to The Cat in the Hat complete with overacting and silly voices.<br />
<br />
I'm here for a purely selfish reason today.<br />
<br />
I wanted to tell you how I'm doing.<br />
<br />
I say selfish because I tell you how Mummy is doing every night - this morning though I thought I'd fill you in on how I'm feeling. <br />
<br />
You know that I miss you more than I can ever say. I know I try not to cry because if I do and you are watching me then you may think that Daddy is sad or that he is lonely. I know youi do see me cry but sometimes they are happy tears because I remember something silly about you. Sometimes I cry because I miss you, you know that but sometimes I cry because some trees look lovely or I hear something about naughty SMA getting a kicking or I want to tell you about something that I can not. <br />
<br />
There is not a day goes by that I don't think about how things could have been and I cry then too. That's selfish though I know. Your poor little body wasn't very well and I know you had started to realise that and that you would have become very upset if you had stayed much longer. <br />
<br />
I know that. <br />
<br />
Sometimes I cry because it was the right thing for you to go when you went. I know that's selfish too because the tears are just my way of saying that I wish things could have been different.I wish I could have held you for longer or sang you a few more songs. I wish I could have kissed that illness out of you and had it in me. God I wish I could. <br />
<br />
The one thing that I never want to be different though is the effect that you had on this world. In your eight months here you managed to move so many people to care, to care about their lives, their children, their hopes- and to care about you.<br />
<br />
<br />
<a href="https://mail-attachment.googleusercontent.com/attachment/u/0/?saduie=AG9B_P-IKsm_2vlCFpv9s-PSB4iI&attid=0.1&disp=emb&view=att&th=137f9279a5667dd8" imageanchor="1"><img border="0" src="https://mail-attachment.googleusercontent.com/attachment/u/0/?saduie=AG9B_P-IKsm_2vlCFpv9s-PSB4iI&attid=0.1&disp=emb&view=att&th=137f9279a5667dd8" /></a><br />
<br />
<br />
<br />
<br />
<br />
So how am I doing<br />
<br />
No point pretending is there - I know you know<br />
<br />
When you first said goodbye I thought that I would never laugh or smile again. You soon showed me that was wrong. You sent me so many signs. That's why days like today aren't too bad. It's not been Christmas or New Year of Father's Day when I have missed you the most. It's at random unexpected moments. It happens a lot when I am driving or showering or waking up. If you see me crying then you have to forgive me please. It's just time without you.<br />
<br />
It's just time passing by,<br />
<br />
The nice people are still here. They are doing all sorts to try and make it that other babies don't have the naughty disease you had. When that happens then I know you will be very happy. Imagine that because of you living other babies don't have to have those tubes and machines and those rooms and those dreadful moments that we thought we were losing you.<br />
<br />
Anyway enough about all that<br />
<br />
It's Father's Day<br />
<br />
I think there will be a bacon butty somewhere along the way. Better had be<br />
<br />
but<br />
<br />
It's Father's Day and you are supposed to get me a present.<br />
<br />
There are 364 days a year when Daddies have the right to spoil their little girls and buy all sorts that they can be told off for but today is my day and I shall be expecting my present later. I hope it's a big one<br />
<br />
What am I hoping for ?<br />
<br />
I don't want a tie<br />
I don't want socks<br />
I don't want a World's Ugliest Daddy Mug<br />
I don't want a trophy<br />
I don't want a card that you have made by painting with your fingers<br />
( Although that would be very nice)<br />
I don't want an electronic thingy machine<br />
<br />
<br />
I just want a moment in the day - an unexpected moment. I just want a breeze across my cheek. I just want a rainbow in the kitchen. I just want a song on the radio. I just want to have one moment when a memory of you comes floating by. I just want a white butterfyl to land on a bush. I just want a memory of something you did.<br />
<br />
I just want a heart rending, awe-inspiring , inexplicable moment when I remember something about you that I have already forgotten.<br />
<br />
It may be something like the way you raised your eyebrows or squeezed my useless finger or smiled when I put you in the big bed and told you to hush so we did not wake Mummy. We talked for hours in teh big bed with Mr Giraffe- all our plans - all our dreams.<br />
<br />
All I want is to know that you are there<br />
<br />
All I want is to know that I have not lost you<br />
<br />
All I want is sunshine on my face or a gentle rain or some natural beautiful moment that creeps up and suprises me and reminds me<br />
<br />
<br />
Of you<br />
<br />
Of my Estella<br />
<br />
Now go and get that sorted. <br />
<br />
I shall be expecting a miracle - not a diddy one - a big whap you in the belly with a fish miracle<br />
<br />
Not much to ask for <br />
<br />
Not much for a Muppet Daddy<br />
<br />
On Father's Day<br />
<br />
<img src="https://mail-attachment.googleusercontent.com/attachment/u/0/?saduie=AG9B_P-IKsm_2vlCFpv9s-PSB4iI&attid=0.1&disp=emb&view=att&th=137f926a0a1fe96c" /><br />
<br />
<img src="https://mail-attachment.googleusercontent.com/attachment/u/0/?saduie=AG9B_P-IKsm_2vlCFpv9s-PSB4iI&attid=0.1&disp=emb&view=att&th=137f9273b9b78c75" />Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-4831070856258014656.post-26798026141624943952012-05-14T19:21:00.000+01:002012-05-14T19:21:03.189+01:00EVERYTHING I OWN<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdTIjzjwGfsVU3IJtciw1-4hSBRxrPZlBs4H3IfJHs8wR926bVjajmbXFRDh_xLXccSp7wRE2TriXUfui_zAzAz5q2pbf-RGOuPQvhgvv0QBUi-cpeP6T_WfeB0JQyI7EOzdYXM4YH/s1600/baloons" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdTIjzjwGfsVU3IJtciw1-4hSBRxrPZlBs4H3IfJHs8wR926bVjajmbXFRDh_xLXccSp7wRE2TriXUfui_zAzAz5q2pbf-RGOuPQvhgvv0QBUi-cpeP6T_WfeB0JQyI7EOzdYXM4YH/s320/baloons" width="320" /></a></div>
<br />
<br />
On Sunday it was six months since Estella passed away. People were very kind as always and we had thousands of messages and photos and balloons and candles. We spent the whole day keeping up to date with all of the very kind support.<br />
<br />
How different to the dark November Sunday evening when we sat by her bed. She had died that afternoon and we had bathed her and dressed her for the final time. If I had to choose one moment from the whole of my experience with Estella that will live with me forever it was watching Maria bathing her little body and preparing her for her final journey. I have never seen anything as heart rendering and sad. I would give the world not to have had to see that.<br />
<br />
The reason I am trying to smash SMA is because I do not want other parents to be there in that room holding their child for the last time. Watching the water wash over legs that can no longer splash and eyes that can no longer see. The dearest person I have ever known silenced and stayed by the most evil and damned of diseases. <br />
<br />
I sat by her bed that night in that cold cold room and read her her story book and sang her her songs and then I got down on my knees and I apologised. I apologised to my little Tinker that there was nothing I could do to have saved her and there was nothing I could do to protect her and comfort her. There was nothing I could do.<br />
<br />
As a Daddy that makes me feel weak. As a Daddy that means I failed. I failed because the most hideous monster that could exist came to take my daughter away and nothing I could do could win that fight. I know I tried but I was nothing compared to Maria and the amazing 24/7 care and love that she gave Estella. I could not save her. And as I knelt I promised her that i would try my very best to make sure that people heard about this disease and I would not rest until it was something that people no longer needed to hear about.<br />
<br />
Six months on and awareness has been raised. We are putting politicians and celebrities and scientists in the same room and moving towards solutions.<br />
<br />
That did not matter last week though.<br />
<br />
Last week we went to the park in Spain where half of Estella's ashes sleep in a lovely fountain. We took her toys and sweeties and a balloon and sat and had a few words. A family came up, as always, and took the gifts away for another child. For another time. For another place.That felt good.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4VVHq2RN-mPw4odPqShNjzXzGQzdnTKEp9A6OrdIohAt2raVrd0qvAZcFgSBf0k79J9PwdhWIy-jBalV3B1W9bdQ_PY_ipGANJsrixrD-1eF7BBfO-0LFZAL29A8g_vRHEsg8l5df/s1600/baloons2" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4VVHq2RN-mPw4odPqShNjzXzGQzdnTKEp9A6OrdIohAt2raVrd0qvAZcFgSBf0k79J9PwdhWIy-jBalV3B1W9bdQ_PY_ipGANJsrixrD-1eF7BBfO-0LFZAL29A8g_vRHEsg8l5df/s320/baloons2" width="239" /></a></div>
<br />
Sat there feeling warmth on my skin and cool breeze in my hair I thought of Estella and how she had always seemed to be so wise and so knowing. I looked at other children and for a moment I wondered why she could not have had more time, more experience, more life. I know the philosophical debate that she lived a full life and one without pain and that she was very loved but she deserved more- she deserved so much more.<br />
<br />
Six months on and life is starting again. The shadows of the night are not always laced with fear and there are still rainbows and there are still moments of beauty and peace. The world is an amazing place and I was gifted for a short, too short, while with the most perfect little daughter. Her little body did not work. Her little mouth could not speak. Her little legs could not run<br />
<br />
but<br />
<br />
Once when I was sat by her side at three in the morning - trying to think of reasons to go on I sat with my head bowed. I looked up and saw that she was awake and I remember one thing.<br />
<br />
Her little eyes could cry.<br />
<br />
A single tear ran down her cheek and she looked at me with such love and such care and such concern. She was crying because I was sad. She was crying because I was crying. She was longing to cuddle me and make it all right.<br />
<br />
Last week when we sat by her fountain Maria said to me that it was OK to cry but she tried her best not to because if Estella was watching she may think that we were crying because we were annoyed at her or diasppointed that she left us - and that broke my heart. <br />
<br />
Wherever she is - six months on - wherever she sleeps - wherever she dreams she has to know one thing ... My darling little Tinker , I could not have been more proud of who you were and who you are and who you will be. No Daddy ever had a daughter so beautiful, so wise, so perfect and so capable of love.You came here for a reason little monkey and if that reason was to bring SMA to an end one day sooner and to ensure that other babies live and that other Daddies dont cry then all is fine and all is fair and all is peace.<br />
<br />
Adn if I tell myself that then I feel Ok<br />
And if I tell myself that I dont cry<br />
And if I tell myself that then I will SMASH SMA<br />
<br />
Even though its never - never- never fair.<br />
<br />
<br />
I miss you with every heartbeat and every breath. I love you with everything I am. <br />
<br />
I could not be prouder of the changes you are making to this world.<br />
<br />
Maybe I failed but I know one thing. Tinker didnt think so. She forgives me<br />
<br />
You wonderful people are helping to keep her spirit alive.<br />
<br />
Thankyou<br />
<br />
Six months on. What do I think we have achieved ?<br />
<br />
Love<br />
<br />
Just love<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYQ5HpKjChcljYRa5vvPEkoxzI_dfTn6PpwBkSat_TEnp4CQ2oXkqDawGutoCSrj5hispcrD4OhApgG-sPdHlMuG2Ref2Jgj5D0vtqdpYPLLhLPvq7v-teUQYv019sLtke86Pz8xyg/s1600/photo4e34.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYQ5HpKjChcljYRa5vvPEkoxzI_dfTn6PpwBkSat_TEnp4CQ2oXkqDawGutoCSrj5hispcrD4OhApgG-sPdHlMuG2Ref2Jgj5D0vtqdpYPLLhLPvq7v-teUQYv019sLtke86Pz8xyg/s320/photo4e34.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s" id="line_7">And I would give anything I own</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s" id="line_8">Give up my life, my heart, my home </span><span class="line line-s" id="line_9">I would give everything I own</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_10">Just to have you back again</span><br /><span class="line line-s" id="line_11">You taught me how to love</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_12">What it's of, what it's of</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_13">You never said too much but still you showed the way</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_14">And I knew from watching you</span><br /><span class="line line-s" id="line_15">Nobody else could ever know</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_16">The part of me that can't let go</span><br /><span class="line line-s" id="line_17">And I would give anything I own</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_18">Would give up my life, my heart, my home</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_19">I would give everything I own</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_20">Just to have you back again</span><br /><span class="line line-s" id="line_21">Is there someone you know?</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_22">You're loving them so</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_23">But taking them all for granted</span><br /><span class="line line-s" id="line_24">You may lose them one day</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_25">Someone takes them away</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_26">And they don't hear the words you long to say</span><br /><span class="line line-s" id="line_27">And I would give anything I own</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_28">Will give up my life, my heart, my home</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_29">I would give everything I ow</span><span class="line line-s">n</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_30">Just to have you back again</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s"></span><span class="line line-s" id="line_31">Just to touch you once again</span></div>
<div class="separator" style="clear: both; text-align: center;">
<span class="line line-s">Just to speak to you - words again</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4aec-bF-8pJN6L3nBXJPDcLciP5CDv7XpAAPXwFrT5XjU9yFTX61qZiDeoNi0QRVEj3xcD8lRdIRtH1X6UyYaY9-NdDgXPdRI8uR4fO_YwUEBozWJPGDYB-Adm5qwpziLAzvNH8rO/s1600/photo+1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4aec-bF-8pJN6L3nBXJPDcLciP5CDv7XpAAPXwFrT5XjU9yFTX61qZiDeoNi0QRVEj3xcD8lRdIRtH1X6UyYaY9-NdDgXPdRI8uR4fO_YwUEBozWJPGDYB-Adm5qwpziLAzvNH8rO/s320/photo+1.JPG" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>Unknownnoreply@blogger.com11tag:blogger.com,1999:blog-4831070856258014656.post-37632749829742465032012-05-14T18:27:00.001+01:002012-05-14T18:27:40.271+01:00SERIOUS SMA SMASHINGSomebody asked me the other day if I really think we can SMASH SMA or if its just a campaign to raise attention about the disease that is the number one genetic killer of children - a disease that is carried by 1 in 40 of us.<br />
<br />
I hope this blog gives the answer<br />
<br />
Those of you who are regular readers will be familiar with the work of Prof. Gillingwater and his team in Edinburgh. They are leading research on finding solutions to SMA and we are backing them by encouraging awareness and funding for them.<br />
<br />
I had the following mail from Tom today<br />
<br />
<strong><span style="color: blue;">Hi Tom & Maria,</span></strong><br />
<strong><span style="color: blue;">I hope you are both keeping well.</span></strong><br />
<strong><span style="color: blue;">I wanted to update you on some very exciting progress in our SMA research that has come through over the last couple of weeks:</span></strong><br />
<strong><span style="color: blue;">- First, we have had a huge number of high-quality applications for the Estella Star SMA Scholarship. We are going to be interviewing over the next couple of weeks and will let you know who we have appointed ASAP. We will ask them to write a short report for you when they finish their project to let you know how they got on.</span></strong><br />
<strong><span style="color: blue;">- Second, we have made some really exciting progress with identifying a potential new drug for SMA. We are going to use the remainder of the funds you have helped raise to undertake pre-clinical testing in SMA mice. Any additional funds that come in will also be used for this trial (we are also hoping to approach some of the large funding bodies in an attempt to raise some serious cash for this...we need at least £50k!). If the results of this trial are positive, and show a beneficial effect of the drug in the SMA model mice, we would hope to try and move the drug towards human clinical trials as quickly as possible.</span></strong><br />
<strong><span style="color: blue;">Both of these developments would not have been possible without your incredible advocacy and support. I can't begin to thank you both enough. I hope that you feel that these developments are moving things in the right direction and that together we can SMASH SMA!</span></strong><br />
<strong><span style="color: blue;">Very best wishes,<br />Tom</span></strong><br />
<br />
<span style="color: black;">They have made some really exciting progress with identifying a potential new drug for SMA and they are going to use the funds you donated to trial this on mice.</span><br />
<br />
The really exciting news though is that a donation of £ 50,000 will enable them to move the drug towards human clinical trials.<br />
<br />
That is earth shattering<br />
<br />
There are millions of pounds donated to charities and pharmacutical firms to help solve SMA and here is the team who may have the solution and they are based in the UK. That has to be worth a 50k gamble. <br />
<br />
We will now dedicate the fund rasing side of SMASHSMA to trying to raise the 50k that Tom and his team need. Every donation counts.<br />
<br />
Here is the web link to make a donation if you would be so kind.<br />
<br />
<br />
<a href="https://edinburghuni.workwithus.org/Fundraising/Donate.aspx?page=7182">https://edinburghuni.workwithus.org/Fundraising/Donate.aspx?page=7182</a><br />
<br />
The idea of there being a scholorship in Estella's name is moving beyond words.<br />
<br />
Am i serious about SMASHING SMA ? <br />
<br />
It's what I promised her.<br />
<br />
We are going to cure this disease. <br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-4831070856258014656.post-43353511024111238592012-04-20T14:35:00.002+01:002012-04-20T14:35:50.180+01:00THE PRETTIEST STAR - MORE THAN WORDS<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW-mw6G9994SdnI91-f1oHkOwlIUBNHGlxgmArrirUAkzakuI_edUO9bN-zNzZWSlAGtqa3Sder1qP6adciDiE570ht1xx7CgHkxqCOhsEpPmPLdHFBnVgEL9vy0Z8n-lazGk2tAvB/s1600/estellaandmum.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW-mw6G9994SdnI91-f1oHkOwlIUBNHGlxgmArrirUAkzakuI_edUO9bN-zNzZWSlAGtqa3Sder1qP6adciDiE570ht1xx7CgHkxqCOhsEpPmPLdHFBnVgEL9vy0Z8n-lazGk2tAvB/s1600/estellaandmum.jpg" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy2AnrgwAArs4cMZ0EizjUL_lscyrs00BNRQSaGQfuZq1DYaEI4SgctpvZljNLvTQFJN3PdJEnxEzLfIslVy_FxP3kU3Ba7fiLDpaVq9oHAsJ739vQdr3vo6jWKHMzgWVFqTpo_BPK/s1600/estella3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy2AnrgwAArs4cMZ0EizjUL_lscyrs00BNRQSaGQfuZq1DYaEI4SgctpvZljNLvTQFJN3PdJEnxEzLfIslVy_FxP3kU3Ba7fiLDpaVq9oHAsJ739vQdr3vo6jWKHMzgWVFqTpo_BPK/s320/estella3.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB1jEXTFixcl7o_N0v2fBvbupkwyURQ92CstDxZblKWY3uyLZKIr-6Gwo54sQCujmBo71AUVf_qtp6xGLs7qlHMsY62Dghz2eG_lJyZ0Vr86aoCL1Kcih23zBs1m3gjDKprKl-s9FZ/s1600/photo3232323.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjB1jEXTFixcl7o_N0v2fBvbupkwyURQ92CstDxZblKWY3uyLZKIr-6Gwo54sQCujmBo71AUVf_qtp6xGLs7qlHMsY62Dghz2eG_lJyZ0Vr86aoCL1Kcih23zBs1m3gjDKprKl-s9FZ/s320/photo3232323.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgm2zzPRLC9aDB6BitPu-lYmramSCBDlDkDV76loJlX-smCA9HjbEqr3W-5ojXH_aPd0bsOGY4rncQisIvLGMtAZgHNiGim5KL7u6hDIz2eWmZSIpQ-eT7KdlWQPffqCiRp2QKSireq/s1600/photo4324.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgm2zzPRLC9aDB6BitPu-lYmramSCBDlDkDV76loJlX-smCA9HjbEqr3W-5ojXH_aPd0bsOGY4rncQisIvLGMtAZgHNiGim5KL7u6hDIz2eWmZSIpQ-eT7KdlWQPffqCiRp2QKSireq/s320/photo4324.JPG" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrQ8xHWpVKzPy0eOCH6rSP3OvHHs_KYa_GX8cM_ce1PLx1ysxMwMh0sm5OeZ3S5ZEtKf79d1dWg8wdG7vZNaqDQ57EAE90bQTaMFKbkZmxoWcFvwijj1_YFoo0TR9x6O3Smou6OFF1/s1600/photo434.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrQ8xHWpVKzPy0eOCH6rSP3OvHHs_KYa_GX8cM_ce1PLx1ysxMwMh0sm5OeZ3S5ZEtKf79d1dWg8wdG7vZNaqDQ57EAE90bQTaMFKbkZmxoWcFvwijj1_YFoo0TR9x6O3Smou6OFF1/s320/photo434.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOrwyPVh35Ks2C8zvz0u63z5JX9wNgCnuqUIhjEFGAs8CVuiYwaIbSP1EBNZf4VVilIckSQDZwKDJevbN3yiImFVtr11NBfRJtlnaKDtaJRGUf8BXVxaBE7M3cLpvRLX8EFC5a8pqa/s1600/photo456.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOrwyPVh35Ks2C8zvz0u63z5JX9wNgCnuqUIhjEFGAs8CVuiYwaIbSP1EBNZf4VVilIckSQDZwKDJevbN3yiImFVtr11NBfRJtlnaKDtaJRGUf8BXVxaBE7M3cLpvRLX8EFC5a8pqa/s320/photo456.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz7xq9N-I0hcLMdB-d67NUXTZJ39edecK6_miJMcO4a93LtqcnMRQOvhyvDJszHmhDxbA1Z_LA4_m9QfZ_nTiA1fGS1IgodN0-X2hDgAfsPBQfEnJaJMn3HN3BPW3Pf56nRxy-pw3C/s1600/photo4e34.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz7xq9N-I0hcLMdB-d67NUXTZJ39edecK6_miJMcO4a93LtqcnMRQOvhyvDJszHmhDxbA1Z_LA4_m9QfZ_nTiA1fGS1IgodN0-X2hDgAfsPBQfEnJaJMn3HN3BPW3Pf56nRxy-pw3C/s320/photo4e34.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLxudVEKJk2ncc4qbumpDz98yA3lHN4-4MlGf4IzfJb1wAyQmmiYv6J85uTetOF5KsPduG4dRt5ZFh0amdQoXJxHyunLrci-4-xjIxAijn0pVYuvlji5rgjAYf14Es2M6doNnI2y-K/s1600/phowwto.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLxudVEKJk2ncc4qbumpDz98yA3lHN4-4MlGf4IzfJb1wAyQmmiYv6J85uTetOF5KsPduG4dRt5ZFh0amdQoXJxHyunLrci-4-xjIxAijn0pVYuvlji5rgjAYf14Es2M6doNnI2y-K/s320/phowwto.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhojNi863CigqjBLJTjikC9jSMGTZWlos1o1Wmxbr9clSkeFkCucrdST2rAXxYjXIKzFuOf7aGrZSp5t7hPB0qG_UL4oJ64n1-pXkHtDgZvs0LeXIybQ34lsxIc3oSCuex193NABDSK/s1600/turtle.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhojNi863CigqjBLJTjikC9jSMGTZWlos1o1Wmxbr9clSkeFkCucrdST2rAXxYjXIKzFuOf7aGrZSp5t7hPB0qG_UL4oJ64n1-pXkHtDgZvs0LeXIybQ34lsxIc3oSCuex193NABDSK/s320/turtle.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu9WXDcUjvnok6mdeXSDqkCaZDQFeyXXkYP-6AWevl6V4zY1xXx1iwiG_OyxyykeaPdMJ30YqNnBfR35ukwNfm-paX3IgWW_uaSJslj581DtLAcEpbya_wY63xMDkzT9dC9e27Cz67/s1600/001.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu9WXDcUjvnok6mdeXSDqkCaZDQFeyXXkYP-6AWevl6V4zY1xXx1iwiG_OyxyykeaPdMJ30YqNnBfR35ukwNfm-paX3IgWW_uaSJslj581DtLAcEpbya_wY63xMDkzT9dC9e27Cz67/s320/001.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnyq79Isz5pGbRv1vFy5ZF3ZWoz-IURYktC0P1H68gyQwq4QxNneewB8wQRkigatZ2XrF8nQct4h_Wvj7ylDgrId2AOBOXVYtOPdgE2hZiTRmlhBuMkR9QGnG92mT_G9ZLDVXwVzhR/s1600/Estella+-26.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnyq79Isz5pGbRv1vFy5ZF3ZWoz-IURYktC0P1H68gyQwq4QxNneewB8wQRkigatZ2XrF8nQct4h_Wvj7ylDgrId2AOBOXVYtOPdgE2hZiTRmlhBuMkR9QGnG92mT_G9ZLDVXwVzhR/s320/Estella+-26.jpg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_hTYYTxg0xCdFHfjVpDa0KfoXZdTUtDVL90fM_Lry-hrChxgJhVmKbIdDfdbAK7TiFhMvoqJHAhML_Zn9G40SNtsROQbFFErbwLQyNeQMyJ2KLuysy1rTK1t61sK98aaRijqjFvQR/s1600/phodsdto.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_hTYYTxg0xCdFHfjVpDa0KfoXZdTUtDVL90fM_Lry-hrChxgJhVmKbIdDfdbAK7TiFhMvoqJHAhML_Zn9G40SNtsROQbFFErbwLQyNeQMyJ2KLuysy1rTK1t61sK98aaRijqjFvQR/s320/phodsdto.JPG" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE6J_jx6FzlfbN9S5_-dEnVbZhcKnPpWjNlU_jvX7sSam5Uxr264zcKi2Kf6eyEeEKisfDCJPqZe0PsTX_8X4LbBrRxNHCcPhHJzPVv23-3ODFGjxpX9PAGqgdU_yZgE7cD8rTUGf9/s1600/photo442.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE6J_jx6FzlfbN9S5_-dEnVbZhcKnPpWjNlU_jvX7sSam5Uxr264zcKi2Kf6eyEeEKisfDCJPqZe0PsTX_8X4LbBrRxNHCcPhHJzPVv23-3ODFGjxpX9PAGqgdU_yZgE7cD8rTUGf9/s1600/photo442.JPG" /></a></div>
<br />Unknownnoreply@blogger.com5