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These pages are written for you as a parent or guardian of a child who has SMA. To make it easier to read we mostly say ‘parent’. The pages cover many of the topics you are likely to come across as your child grows. They give you some basic information and links to useful websites and organisations. They include tips and experiences from families. If you see anything that is not correct, a link that 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 a young girl with blond hair. She is sitting in her wheelchair and 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