I've raised £10000 to help Jenson with improvements to his home to accommodate his condition - Spinal Muscular Atrophy (SMA)

Organised by Darren Sims
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Disability support

Story

Jenson has a medical condition with the name, Spinal Muscular Atrophy (SMA) Type 2, Jenson is completely dependent on his parents for all of his needs, twenty four hours a day.
The family need adaptations to their home to enable Jenson to grow and progress in a safe and suitable environment & his family all want to stay in their family home. Jenson has been awarded a Grant of £30,000 from our local Council. However the adaptations that need to be done to the house is going to cost around £60,000, So we have to raise £30,000 which will be done by fundraising and events.

The work that is needed include a Single Storey Extension to the back of our house, A Ramp, Widening of Doorways, Removal of downstairs walls, Wet room, Installation of a ceiling track & Hoist, amongst other works. This will help Jenson a lot as he will have his own room that he can access with his wheelchair, as when he gets bigger he will get a lot heavier too.

Message from Jenson's parents - Jenson was diagnosed with SMA when he was 14 months old and as you can imagine our world felt like it was torn apart. Since the diagnosis we have learnt about the condition and what his needs are and what they will be in the future but we are always still learning new things about it. There is no cure for Jenson's condition, it is a genetic disease that causes Muscle weakness and progressive loss of movement. This occurs due to deterioration in the nerve cells (motor Neurones) connecting the brain and spinal cord to the body's muscles.

As the link between the nerves and muscles breaks down, the muscles that are used for activities such as crawling, walking, sitting up, and moving the head become progressively weaker and shrink (atrophy), Mental abilities are unaffected by SMA. There is no treatment for his condition and if Jenson becomes ill it effects him so much worse than a normal child of his age. Jenson can go downhill fast for even just what would be a simple cough and cold. Thank you everyone x

About fundraiser

Darren Sims
Organiser

Donation summary

Total
£2,230.00