Spinal Muscular Atrophy

[Ferfecksackmammy]

My 11 month old ds has been diagnosed with sma my heart is breaking. We start treatment (Spinraza) on Friday. Is there anyone who has gone through this diagnosis?

I’m so sorry. It’s a very difficult diagnosis to get your head around. Do you know which type?
I haven’t experienced it as a parent but have known several children who had it - albeit many years ago now. I suspect you’ve already been given details of the SMA U.K. association where there will be other parents who understand.
It might, if you feel ready, be worth asking for a referral to your local children’s hospice who provide all sorts of support services for families with children diagnosed with challenging conditions. They are all fabulous and happy places which support the whole family from diagnosis into adulthood sometimes.

It's on the boarerline between type 1 and 2. He can sit unaided but for less than a minute. The results from treatment available at the moment seem to be positive and a second treatment which is not yet available in the UK even more positive. It's been a difficult few days and my emotions are all overwhelming right now!

Hello. I taught a young girl with SMA over 25 years ago now. Despite all her obvious difficulties she was very bright and had lots of friends in her (mainstream) school. She did well at school and then went to university and earned a degree. She now lives independently and has a career. So whilst of course this must be a sad and scary diagnosis for you, I wanted to offer you some hope for a future for your DC. All the best .

I’m sure it’s a huge thing to get around. Hope you have good support both from family and from the medical team. You’re entitled to feel overwhelmed.