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These pages are written for you as a parent / guardian of a child who has SMA (for ease of reading, we have tended to refer to ‘parents’ throughout). They cover many of the wide range of topics you are likely to come across as your child grows. They give you some basic information and provide you with links to other useful websites and organisations. They include tips and experiences directly from families. If you find anything has changed, a link does not work or you would like to share your experience to help others, please email:

baby doing physio

Health & Wellbeing

Image shows a young boy who has SMA using a hoist with a PA assisting him.


Girl in powerchair with Grandfather

Life in General

Image shows child who has SMA Type 2 reading a book

Nursery & School

Image shows a young girl who has SMA in her wheelchair pushing a dolly in a pram.

Transport & Holidays

Image shows a family sitting round a table colouring - a mum, dad, daughter and their son who has SMA Type 1.

Financial Support & Benefits