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.
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.
If you want the whole story in two minutes then this video tells all
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.
The most common reaction when people hear about Estella and our experience is that they have never heard of SMA. This is not just people in the street it is health professionals , midwives , carers , - so many people who have never heard of the disease.
So that explains the first simple philosophy of the SMASH SMA campaign
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.
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.
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.
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.
The thinking behind this is simple.
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.
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.
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.
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.
We will need your support in the consultation.
The third way that we are trying to help involves raising research funding.
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.
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.
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.
For full details read
https://edinburghuni.workwithus.org/Fundraising/Donate.aspx?page=7182
So that's awareness , prevention and research funding
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.
There are three ways we are trying to keep people up to date.
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.
Two is our Facebook account - look up Estella Meansstar and you will find us
http://www.facebook.com/profile.php?id=100003101507661&ref=tn_tnmn
Third - you are reading it now - there is an even better blog available though from Cuddly Mummy
which is called NO MORE ANGELS
http://estellasweetman.blogspot.com/
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.
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.
http://www.bluebellwood.org/estella.php
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.
Thanks xx
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