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
Wow that's just fantastic news! So much has been achieved in such a short time. Estella would be so proud of you both. As am I. Think of you all often and with you every step of the way x
ReplyDeleteCrying tears of happiness for you! Not a ba day at all Muppet Daddy, well done!
ReplyDeleteI've actually filled up reading that. The estella star scholar ship is beautiful! The government looking at screening for SMA is fantastic! And the possibility of SMA milk getting a re brand is great! You have achieved so much in a short time for your beautiful little girl. She will be so proud. Xxxx
ReplyDeleteHuge achievements! Amazing to read this. Well done you have had such strength and will no doubt go on to continue making such huge achievements.x
ReplyDeleteI'm in tears, bless that little Tinker xxx
ReplyDeleteCrying like a fellow muppet!
ReplyDeleteWell done, you're an inspiration and of course we'll do all we can to help xx
#SMASHSMA
That's all such amazing stuff. Well done Team Estella. x
ReplyDeleteEvery time I read your blog I am in tears. It makes me think of how how proud Estella must be of her muppet daddy! I showed my students the website for Bluebell Wood and they were determined to raise some money. So far we have raised £400 and we still have two weeks of fundraising to do. I hope that this money can be put towards the memorial for Estella x
ReplyDeleteCongratulations to all of you...and thanks to the people who are paying for the memorial garden. SMA will be well and truly smashed. :D
ReplyDeleteCongratulations on such wonderful news. I feel so happy but I cry, too, because you miss your daughter. You have worked so hard, and of course it would never be in vain, of course you have so much support, like you deserve. You have changed the world of so many people for better from your world changing too. I will be one of the first there when they test for SMA, and I know you will meet all of your future goals.
ReplyDeleteI'm filling up just reading this. I was one of the first 500 people to follow you on twitter and now look where we are. Please update your twitter to tell us when we are needed to support you, so much can get missed on twitter feeds. Well done Muppet Daddy, Estellla will be so proud of you xx
ReplyDeleteYou are an amazing Dad. You bring tears to my eyes when you show your lovely tinker how much you still love her by your words and your actions. People are listening to you, and so is she xx
ReplyDeleteWe all seem to be sharing your tears and feeling your sorrow, if only we could take it all away for you. But because we can't we'll do whatever we can to help give you the strength to continue with your fight against SMA and to keep your cause and your beautiful little tinker's star alive. xxx
ReplyDeleteThis was beautiful. I'm so hopeful for all the good that your sweet girl will do for so many.
ReplyDeleteMy baby was just diagnosed with type II SMA. I'm so sorry for your little girl. I hope you win this and spare many other babies the same fate. Best of luck.
ReplyDeletevery awesome achievements! i came across Estella's story on Avery's Bucket List Blog and it touched my heart. i am definitely joining you for the fight against SMA.
ReplyDeleteLet's all SMASH SMA!!!!!!!!!!
ReplyDelete