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  • New Malden parents raising money to give ‘cheeky and intelligent’ two-year-old with spinal muscular atrophy power chair – Surrey Comet

New Malden parents raising money to give ‘cheeky and intelligent’ two-year-old with spinal muscular atrophy power chair – Surrey Comet

Tuesday, 30 May, 2017

New Malden parents raising money to give ‘cheeky and intelligent’ two-year-old with spinal muscular atrophy power chair – Surrey Comet

The parents of a two-year-old boy with spinal muscular atrophy (SMA) are raising money to buy a power chair to give him his independence.

Kelly Jones and Luke James, of Mount Crescent Road, New Malden, are running a 5k inflatable course next Saturday (June 3) as their latest in a series of fundraising efforts to ensure their son Vinnie gets the help he needs to thrive.

SMA is a genetic disease, causing deterioration in nerve cells connecting the brain and spinal cord to the muscles.

Vinnie was diagnosed with Type 1, the most severe type, when he was eight weeks old.

He then lost the ability to breathe and swallow full time independently, and currently uses a ventilator for 16 to 17 hours a day.

Miss Jones said: “It’s difficult, and it’s full on, but Vinnie is cheeky and very intelligent. He’s non-verbal, but very vocal. He’s a lovely little boy.

“The chair would let him move around. He currently has to stay where we put him, but this would give him his independence. He’s a toddler. He should be running around causing mayhem but he’s not able to.”

The chair will cost close to £18,000, and Vinnie’s parents hope to raise the money quickly, because the chair will take weeks to be built and they wants him to enjoy as much of the summer as possible, and to be able to move around his with big sister Kaydee.

Babies who have Type 1 SMA often die before their first birthday, but Vinnie is part of a trial at Great Ormond Street Hospital that has seen positive results.

Miss Jones said: “It’s amazing. It’s really slowed down the progress of the condition. We’re seeing massive improvements.”

The trial drug, nusinersen, is thought to correct the faulty gene expression that causes SMA, and has now been approved by the FDA in America.

For more information about Vinnie’s story, and to contribute, visit gofundme.com/give-vinnie-his-independance.


Source: New Malden parents raising money to give 'cheeky and intelligent' two-year-old with spinal muscular atrophy power chair - Surrey Comet

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