My daughter has SMA, diagnosed at 8 months. For the majority of children, this means that they are unlikely to live past their 2nd birthday. We, her parents, had never heard of it prior to our daughters diagnosis and yet 1 in 40 of us (mostly unknowingly) carry the faulty gene for it. 2 carriers have a 25% chance of conceiving a baby with SMA in each pregnancy. It is a devastating condition that manifests itself causing increasing weakening of the muscles until the sufferer no longer has the muscle strength to continue breathing. Our baby will never sit unsupported, crawl or walk. We've had to watch as she's lost her ability to move her legs and arms. Her mind is unaffected. But there is a drug that could halt and reverse these symptoms and all we are asking for is just a chance to access it for our daughter and thousands of other terminally ill children in her condition. As a mum and desperate and I'm begging for your help. I don't want to say goodbye to my baby girl! petition.parliament.uk/petitions/121253 . If you could spare a minute to read this petition I'd be so grateful and please see Helena and her fight at www.helpforhelena.CO.UK
Many thanks!
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charlotterussell · 02/04/2016 22:06
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