In August, we received the devastating news that our daughter has SMA type 1. Although we were fortunate to have this disease diagnosed early, many others are less fortunate due to a lack of knowledge and awareness, which extends even to some medical professionals.

We highlighted our concerns to several medical professionals on 6 different occasions before deciding to go to the hospital. Our hope is that by raising awareness, we can help other parents recognise the signs of SMA.

SMA UK provides invaluable support for families and individuals affected by this condition. We aim to raise funds to ensure the charity can continue its important work and, hopefully one day, help find a cure!

Established for over 30 years, SMA UK are a charity that supports, campaigns and advocates so that everyone affected by Spinal Muscular Atrophy can access the best care, services and treatments, and benefit from continued research. We offer adults, young people, parents, relatives and friends emotional support, practical advice and guidance from our experienced team and provide reliable health and social care information about SMA. We also provide and distribute free multisensory toy packs for infants who are diagnosed with SMA.