Friday, April 20, 2012
Wednesday, April 18, 2012
ONE FINE DAY
By any stretch of the imagination an amazing day.
A TV company is paying for a memorial garden at Bluebell Wood. We met with the companytwice and they will be filming Maria in June.
Tom Gillingwater contacted me today from Edinburgh University . You may remember his team are working on an SMA cure. They have decided to introduce a scholarship at the University for a student. The scholorship is called the Estella Star SMA memorial scholorship and will allow a student to be trained to help find a solution to SMA. As you can imagine an over emotional Mupet Daddy found this idea to be more than wonderful. Weeping like a fool.
I thought nothing could beat that.
Then we got home and there was a letter from The Deputy Prime Minister.
He had sent a response last month from the secretary of state. I did not write about it at the time because it was not very positive. I wrote back with a few comments and asked for more.
Today it came
Are you ready for this ?
The Parliamentary Under Secretary for Public Health , Anne Milton MP has agreed that SMA will be considered for preconception and carrier screening by the UK National Screening Committee (UK NSC). They are going to look at the viability of screening for SMA - and here is the important bit - for the very first time ! They have never considered SMA screening before.
I have been asked to contact the Projects Manager who will be responsible for the consultation and reviews process. In other words there will be a public consultation before they decide whether to screen for SMA.
When I last held Estella's hand and looked into her eyes I promised the little Tinker that we would SMASH SMA for her.
Five months on the UK Government has asked for a detailed enquiry and consultation to decide if SMA should be screened for. 1 in 40 of you reading this article carry |SMA. It is the number one genetic killer of babies.
In the coming months I will need you.
I will need you to be part of the consultation and the review. I will need the strength and support and love that you have shown to our Tinker
because in the next 5 months
We are going to take awareness of this disease into the House of Commons
We are going to have a reception hosted by the Deputy Prime Minister
We are going to have research and consultation into genetic screening for SMA
We are going to have a major celebrity raising the profile of SMA nationally
We are going to have over 20,000 social network followers
We are going to fund SMA research at the University of Edinburgh
We are going to raise thousands of pounds for the Jennifer Trust
When I last held her hand I promised her that we would SMASH SMA. I never dreamed that so many of you would walk this path with us. But you have.
Tonight I am very happy
but
What I would rather be doing is bathing Estella and watching her splash and play.
What I woulod rather be doing is drying her with a bif towel and holding her close
What I would rather be doing is singing her a song and telling her a tale
What I would rather be doing is tucking her in and kissing her cheek
Nite Nite. Sleep Tight. Don't let the bed bugs bite.
And watching her breathe and sleep with stars shining through her window.
Muppet Daddy can't do that
I was her Dad for eight months. She gave me the happiest days of my life.
Now ?
I'm going to SMASH SMA into so many little brittle pieces.
I'm going to SMASH SMA until no babies have to kiss goodbye to their Mummy and Daddy
I'm going to SMAS SMA and then I'm going to sit by Tinker's Fountain and I'm going to sing her a song and tell her a tale and tell her that there will be babies that will laugh and breathe and run and laugh and love and live .... because of her.
Because of her
I'm going to SMASH SMA - and you are going to scatter that disease to the winds and the rain and the rain and the skies.
They are going to consider screening for SMA
For the first time ever
Because of a little Tinker
Because of you
Thankyou
FOOTNOTE and on the same day Pfizer have announced that they are going to sellall of their baby care products to Nestle. An ideal opportunity to change the name of their SMA milk.
A garden at Bluebell Wood
A scholorship at a University in her name
A major drug company shamed into selling its interests in SMA milk
and
A government that heard every tweet , every message you wonderful people posted.
Not a bad day Tinker
Not a bad day
i love you
A TV company is paying for a memorial garden at Bluebell Wood. We met with the companytwice and they will be filming Maria in June.
Tom Gillingwater contacted me today from Edinburgh University . You may remember his team are working on an SMA cure. They have decided to introduce a scholarship at the University for a student. The scholorship is called the Estella Star SMA memorial scholorship and will allow a student to be trained to help find a solution to SMA. As you can imagine an over emotional Mupet Daddy found this idea to be more than wonderful. Weeping like a fool.
I thought nothing could beat that.
Then we got home and there was a letter from The Deputy Prime Minister.
He had sent a response last month from the secretary of state. I did not write about it at the time because it was not very positive. I wrote back with a few comments and asked for more.
Today it came
Are you ready for this ?
The Parliamentary Under Secretary for Public Health , Anne Milton MP has agreed that SMA will be considered for preconception and carrier screening by the UK National Screening Committee (UK NSC). They are going to look at the viability of screening for SMA - and here is the important bit - for the very first time ! They have never considered SMA screening before.
I have been asked to contact the Projects Manager who will be responsible for the consultation and reviews process. In other words there will be a public consultation before they decide whether to screen for SMA.
When I last held Estella's hand and looked into her eyes I promised the little Tinker that we would SMASH SMA for her.
Five months on the UK Government has asked for a detailed enquiry and consultation to decide if SMA should be screened for. 1 in 40 of you reading this article carry |SMA. It is the number one genetic killer of babies.
In the coming months I will need you.
I will need you to be part of the consultation and the review. I will need the strength and support and love that you have shown to our Tinker
because in the next 5 months
We are going to take awareness of this disease into the House of Commons
We are going to have a reception hosted by the Deputy Prime Minister
We are going to have research and consultation into genetic screening for SMA
We are going to have a major celebrity raising the profile of SMA nationally
We are going to have over 20,000 social network followers
We are going to fund SMA research at the University of Edinburgh
We are going to raise thousands of pounds for the Jennifer Trust
When I last held her hand I promised her that we would SMASH SMA. I never dreamed that so many of you would walk this path with us. But you have.
Tonight I am very happy
but
What I would rather be doing is bathing Estella and watching her splash and play.
What I woulod rather be doing is drying her with a bif towel and holding her close
What I would rather be doing is singing her a song and telling her a tale
What I would rather be doing is tucking her in and kissing her cheek
Nite Nite. Sleep Tight. Don't let the bed bugs bite.
And watching her breathe and sleep with stars shining through her window.
Muppet Daddy can't do that
I was her Dad for eight months. She gave me the happiest days of my life.
Now ?
I'm going to SMASH SMA into so many little brittle pieces.
I'm going to SMASH SMA until no babies have to kiss goodbye to their Mummy and Daddy
I'm going to SMAS SMA and then I'm going to sit by Tinker's Fountain and I'm going to sing her a song and tell her a tale and tell her that there will be babies that will laugh and breathe and run and laugh and love and live .... because of her.
Because of her
I'm going to SMASH SMA - and you are going to scatter that disease to the winds and the rain and the rain and the skies.
They are going to consider screening for SMA
For the first time ever
Because of a little Tinker
Because of you
Thankyou
FOOTNOTE and on the same day Pfizer have announced that they are going to sellall of their baby care products to Nestle. An ideal opportunity to change the name of their SMA milk.
A garden at Bluebell Wood
A scholorship at a University in her name
A major drug company shamed into selling its interests in SMA milk
and
A government that heard every tweet , every message you wonderful people posted.
Not a bad day Tinker
Not a bad day
i love you
Thursday, April 5, 2012
THE BIGGEST WISH
The most common question we get asked when people hear Estella's tale is , " What can I do to help?" It's a wonderful reaction , it's a very human reaction and it leaves me genuinely humbled every time somebody says it.
What they do not realise is that simply asking the question is helping. It shows they care.
I know there was something very special about my daughter. I am biased but time and time again I see people moved and willing to do anything they can to tell her story. I know when that happens that the magic and the mystery that was Estella is still alive and I am so so grateful.
BUT
This blog is not about Muppet Daddy - it's about practicalities. People ask how they can help and so I wanted to write a blog with genuine hard factual ways that they can contribute towards helping us. The only thing that I will say again is that I am so moved by the fact that people actually want to do anything . I take nothing for granted. I expect nothing. All you do for us , for SMA awareness , for Tinker is gold dust. Thankyou, with all my heart , Thankyou.
If you are here then I don't need to retell Estella's story. It is documented well enough elsewhere in the blog. I will just concentrate on things that can be done to make this world a better place.
What they do not realise is that simply asking the question is helping. It shows they care.
I know there was something very special about my daughter. I am biased but time and time again I see people moved and willing to do anything they can to tell her story. I know when that happens that the magic and the mystery that was Estella is still alive and I am so so grateful.
BUT
This blog is not about Muppet Daddy - it's about practicalities. People ask how they can help and so I wanted to write a blog with genuine hard factual ways that they can contribute towards helping us. The only thing that I will say again is that I am so moved by the fact that people actually want to do anything . I take nothing for granted. I expect nothing. All you do for us , for SMA awareness , for Tinker is gold dust. Thankyou, with all my heart , Thankyou.
If you are here then I don't need to retell Estella's story. It is documented well enough elsewhere in the blog. I will just concentrate on things that can be done to make this world a better place.
OK. That's Estella. She is why we are here
What can you do to help ?
ENCOURAGE SOCIAL NETWORKING
We have over 16,000 followers on Twitter and 1,300 on Facebook. They are very powerful tools. I spend three hours every day keeping on top of things and trying to answer every message in person.
This is one of the main areas where you can help. Some people are there just to follow, some are there to support and some seem to work all night trying to spread the word. There will be different responses but overall you can help by
- Retweeting when you find something interesting
- Encouraging your followers to follow Estellastar1 on Twitter or Estella Meansstar on Facebook
- Joining in with the silly photo competitions. They raise awareness
- Trying to get a celebrity retweet. Stephen Fry brought 1,000 new followers and Rio Ferdinand added 2,500 in 3 hours. Think carefully about what you ask them to tweet. Will it grab attention ? Don't complain if they don't help. They get hundreds of requests but they are very kind and many do respond.
FOLLOW WORTHY CAUSES THAT HELPED ESTELLA
Every now and then I will ask that you follow another cause. Usually these are people that made Estella's little life better. Wonderful people like THE JENNIFER TRUST or BLUEBELL WOOD. Sometimes though I see a family out there struggling to raise awareness and I like to think that we can help them. Every time I do that I think of Estella smiling at helping a family or a baby.
CONTRIBUTE TO SMA RESEARCH FUNDING
We decided very early on that we were not going to set up a SMASHSMA charity. We are not rich but we are not poor and we don't want any money at all for anything. The promise that was made to Estella was that we would do everything we could do to do three things
1) Raise awareness of SMA so that people know that this disease is the number one genetic killer of babies
2) Help any family who came our way by telling them of our experiences and listening and being there
3) We would do everything we could do to genuinely get rid of this disease.
Number 3 is the one that confuses people. I think when we talk of smashing SMA some people see us as grieving parents who are trying to do the impossible. It's not impossible. There are many institutions with hundreds of thousands of pounds trying to come up with a cure. There are genuine people out there and I know they are coming up with major breakthroughs every day.
So
We suggest three different kinds of charitable donation
1) BLUEBELL WOOD - This is the hospice that gave Estella her childhood. Any donation to them makes us very happy indeed. That's a personal response.
2) JENNIFER TRUST - They are superb at helping parents with newly diagnosed children. They give practical and real advice and they make a daily difference.That's a response that helps parents of children with SMA
3) EDINBURGH UNIVERSITY - This is our big one. If the team at the University can get £100,000 I am convinced that they will make massive contributions to ending this disease. I wrote at length about them in the last blog - they are doing amazing things and they will make a difference to so many lives. Trust me please. I live and breathe SMA and research and developments . Tom Gillingwater and his team are the real deal. If you want to SMASHSMA give them a tenner. If you're a celeb reading this make a donation of a hundred grand and let's get rid of this disease !
Please donate by following the link below
SIGN THE PETITION
We have had terrific all party support for the raising of SMA awareness and there are going to be remarkable things happening in the coming months. We have met with The Deputy Prime Minister, Nick Clegg and he has remained in contact.
We need to have SMA discussed in Parliament - this will happen soon one way or another but we also have a petition to raise awareness of the need for screening for the disease. Even though we will have the matter discussed in the House of Commons it would still be good to have as much support as possible for this important petition. If you have not signed it already then please do so. Every person will count.
THINK OUTSIDE THE BOX
Don't be afraid of having a brilliant idea. We have had people writing SMASHSMA on their backs and taking photos, we have had people diving out of planes, we have had people writing SMASHSMA in the sand, we have had people painting portraits of Estella, we have had a star named after her, we have had school assemblies about SMA and people writing to their MP, we have had blogs, lit candles , made cakes and biscuits , painted SMASHSMA on their kids, written poems , - not only do all these things raise awareness they make Muppet Daddy and Cuddly Mummy so proud of the effect that their little Tinker is having on the world.
Do daft things - we love them !
THE BIGGEST WISH
What would I ask of you if I could only ask one thing though ?
What is more important than the money and the awareness and the retweets?
How can you really make a difference ?
This one is the simplest answer of all.
If you have children. If you have the amazing luck to have children that are there with you every night. If you have children in your life. If you are a Mummy or a Daddy or a Grandparent then do one thing
Cuddle them so very closely.
Read to them even when you are tired
Listen to them even when they don't seem to be making any sense.
I have had happy moments since Estella said goodbye. Some really happy moments. Those moments have all been when something happens to remind me of how she felt, and how she looked and how she smiled. I was amazed that I still had any capacity to laugh or joke or smile or taste happiness.
The fact that I can is only because I was so lucky. I was lucky enough to be a Daddy for eight months, I was lucky enough to have some impossibly beautiful moments and I was lucky enough to see eyes looking at me with more love than I ever imagined existed.
I was lucky enough to love and to be loved by a little Tinker who has never left my heart, who has never left my soul.
So what I ask of you is very simple.
When you tuck your kids in at night. When you kiss them goodnight and walk wearily down the stairs to the heaven of tea and armchair - every now and then remember Estella and when you do remember that you are so blessed to be so loved by your children and you are so blessed that they will be there in the morning - causing a commotion.
And if enough people do that then she is still here.
If enough people do that then she remains real
If enough people do that then there is a star that will always burn bright.
This Easter - buy more eggs than they need.
and do one more thing
If you take them to the park and you watch them play and watch them run
Do one more thing
When you've had enough and you want to go home
Do one more thing
It's the biggest thing of all. If you read on you have to do this ...
Look at your watch and give them an extra 30 minutes beyond the time when you think you've had enough Sit and watch them and just for that thirty minutes imagine what riches, what fortunes, what gold I would give to have 30 more minutes with my Tinker. 30 little minutes watching her play. 30 more minutes to tell her what she means - what she will always mean.
Imagine what that 30 minutes would mean to me
Enjoy what that 30 minutes become to you
And if you can do that I promise you - you will have the happiest half hour of your life.
Go on , let them play a little longer and let them stay up to watch that programme that they want to watch. Cuddled up with their Mummy. Nestled into their Daddy
Have a lovely Easter
Thankyou for being there
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