Spinal Muscular Atrophy

(3 Posts)
charlotterussell Wed 30-Mar-16 20:54:24

Hello,

I've been trying to do my best to raise awareness of Spinal Muscular Atrophy. I'm extremely sad to say that my beautiful daughter Helena was diagnosed with this condition at 8 months old. SMA is a motor neurone disease for which there is currently no treatment. It is a devastating condition, which causes increasing paralysis until the sufferer no longer has the muscle strength to move the muscles required to breathe (in terms of how it manifests it's very similar to ALS, suffered by Stephen Hawking), her brain and intelligence is not affected in SMA. Most suffers do not live past their 2nd birthday. I've created a website dedicated to my daughter at www.helpforhelena.co.uk and I've also created a parliamentary petition to ask the government to encourage the FDA and EMA to make treatment shown to be halting and reversing the condition to be made available to all children with SMA. petition.parliament.uk/petitions/121253 . Please if you could read this information and if you agree with it sign it and share it with your friends, we would be so grateful. We just want hope for Helena and we don't want to spend everyday terrified anymore.

Thank so much to everyone who takes the time to read this.

Charlotte, mummy of Helena.

KatherineMumsnet (MNHQ) Fri 01-Apr-16 15:02:20

Hi there Charlotte,

We're just going to move your thread over to our Petitions topic, where we hope you get a great response. flowers

Very best wishes,
MNHQ

charlotterussell Fri 01-Apr-16 18:57:27

Thank you for your help Katherine.

With best wishes,
Charlotte

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