Sebastian is a curious, lovely 3 year old boy from Hatfield in Herts who loves books, playground (if they are accessible) and cars and trucks. Sebastian was diagnosed with Spinal Muscular Atrophy type 1 when he was 4 months old. This is a condition with a life expectancy of 2 years. Without treatment Sebastian would deteriorate, overtime losing his ability to swallow, to eat, to breathe and the little movement he had managed to gain. Fortunately, he has received gene therapy (Zolgensma) which helped to slow stop this.

However, every day Sebastian must do physiotherapy and hydrotherapy to gain as much movement and mobility as possible. A doctor once described zolgensma as a protein transplant. Sebastian can have the protein but he has to move to make use of it. Zolgensma without physiotherapy is like a car without fuel.

We want to improve Sebastian’s life, enhance his development and provide him with support that would enable him to explore the world in his own terms and continue to develop. We aim to use funds for his physiotherapy, and specialist orthotics that support Sebastian in standing and controlling the inevitable scoliosis due to low muscle tone, speech and language therapies so he continues to improve his communication skills) as well as wheelchairs, standing frame, vibration plates – all thing that help Sebastian build his muscles despite the degenerative disease.

Thank you.

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