When Sidney was first diagnosed, we reached out to them and they sent us out a pack with information and toys which was really lovely. They offered support when we needed it most. The family meet ups that they organise have been a lovely way to meet other people with SMA and their families, and it’s been particularly comforting to meet adults living with the condition as well and learning from their experiences, as well as of course meeting other families with young children too.” 

“Unfortunately it ended up being us as parents diagnosing Sidney, we had an awful experience with medical professionals trying to get a diagnosis, and I was sent away as if i was some kind of neurotic mother. It took a careful bit of Google searching and when I realised I had found the answer it felt like my world fell apart. I rushed him into our local hospital and pleaded for them to listen to me, and finally at 4 months his diagnosis was confirmed, by which time Sidney was already very symptomatic and damage had been done” 

“Fast forward 18 months, Sidney is not only living but he’s thriving. He received Zolgensma shortly after diagnosis and is receiving Spinraza too which has really helped with his strength and fatigue. I’m pleased to say that with a lot of hard work and determination he is doing very well indeed. He’s a cheeky little chap, with a very good sense of humour and knows how to bat his eyelashes to get what he wants. He is showing lots of signs of being a very determined little boy who isn’t afraid to speak up if he’s not happy! We are beyond proud of how far he has come”