Eventually all of this will be tidied up and I will get lots of info about Estella and SMA on here but for now I just wanted to let you all know how the meeting with the Senior Geneticist wenr today.
A number of issues were raised and it was interesting to see the full support that we were offered. There is clearly a lot already happening but here is the outline
1) A meeting is being set up with Directors of one SMA group to discuss possible options. This does not mean other charities and organisations will be in any way excluded - see point 2
2) There is already a neurology alliance that we are being put into contact with. This group bring together charities and organisations working on all types of related diseases. This is the best way to seek action as then there will be thousands of people involved
3) The call for screening IS appropriate. there is a medical organisation that determines which diseases are screened for. there are precedents of this being changed by interest groups. We are being given the appropriate contacts and will lobby for SMA to be apriority screening disease that anybody can get a free test for. If there is opposition we will do this in the form of a government political petition. Some of the Twitter followers can already help here.
4) The £ 400,000,000 that was committed to SMA research last week will make a significant difference to the time taken to find a cure
So - to sum up
- We are now starting to press for universal testing for anybody who requests it
- We are now starting to talk to the charities and interest groups about pooling resources through the neurological alliance
- We are about to meet with the SMA milk company regarding a possible name change
Things are starting to happen
The only reason they are starting to happen though is because of the amazing support that you are all giving. There are some followers who are putting in hours a day pursuing more and more followers. We are genuinly grateful and humbled by the love and respect that you are showing for a little girl who deserved the world. Estella would be proud of every one of you.
People keep saying that we are brave. We are not. We are a very upset Mummy and Daddy that have lost the amazing gift that we had for a few precious weeks.We cry every day but we promised that little tinker that we would SMASH SMA. What we did not know then was that there are people like you out there who would help us.
This is not just a small effort - between us we are going to make a difference and we are going to beat this disease. Not for us - not for Estella - but for every child that you , your children and your grand children have.
This changed our lives forever. Estella came here for a reason. If you had met her you would have been amazed at the wise old soul that existed behind her eyes. What if her legacy was that other babies would live, that other Daddy's would not cry and that other Mummy's dont feel their child's last breath while holding them in their arms for the final heart rending moment?
Somehow then all this heartbreak makes some kind of sense
This is for real - we promised our daughter to SMASH SMA
Thankyou
estella was a very inspirational little girl. she has already started to change things and there is much more to come x
ReplyDeleteEstella was a beautiful baby girl, and your love and pride for her shines through.
ReplyDeleteIt's good to see that you have some focus and direction now. Collaborating with other groups is a great idea as it will give you more supporters and more gravitas. I'm also pleased to see that the medical community will give you some support!
I think that the hardest part of your journey ended a few weeks ago now, in comparison this bit will be easy. Keep focussed on Estella and your love for her and you can achieve this! You and Estella are *already* making a difference, you're raising awareness of SMA. Smashing SMA is Estella's legacy and through you I am sure it will be achieved.
I wish you all the very best, if there is anything I can do please just let me know, you know where I am.
Cx.