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
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.
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
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
A government that heard every tweet , every message you wonderful people posted.
Not a bad day Tinker
Not a bad day
i love you