By:Christopher McKeon
Dylan Carter, 11, has spent years on a mattress in his grandmother’s front room as he cannot sit up without it causing him severe pain

A boy from Woking finally has a smile on his face after 11 years of pain thanks to new equipment which has improved his quality of life.

Dylan Carter, 11, was born with a rare genetic condition that means he cannot control his movement and finds sitting in his wheelchair for any length of time agonising.

He lives with his grandmother, Liz Barrett, and has spent his time at home lying on a mattress in her front room as this is the only place he can be comfortable.

Ms Barrett said: “He doesn’t tolerate his wheelchair for long, so by the time he has been in it for his journey home from school he is ready to come out again.

“He can’t sit on an ordinary chair, so Dylan had a mattress on the floor of the living room – he spent the last 11 years there.”

The mattress means Dylan can be part of family life, rather than being alone in his room, but has proved far from an ideal solution.

At school, he uses specialised equipment – a cross between a wheelchair, bed and therapy table – but social services do not provide the same equipment for home use.

However, thanks to the charity Newlife, which specialises in support for disabled and terminally ill children, Ms Barrett was able to raise funds for the equipment Dylan needs to improve his quality of life.

His grandmother said: “It is absolutely brilliant – Dylan’s got a smile on his face all the time.

Dylan can now be comfortable at home (Image: Newlife Charity)

“The equipment gives him all the support in all the right places to keep him comfortable so that – although he can’t talk – he’s verbalising more and is so much happier in himself.

“He used to wince in pain every time we had to move him to feed him, change him and help prevent the pressure sores – that doesn’t happen anymore.”

Dylan’s condition is called Schprintzen-Goldberg Marfan Syndrome. As well as being unable to control his movement, he uses oxygen, has a tracheostomy to help him breathe and a tube into his stomach for nutrition. His sternum also protrudes and he has curvature of the spine.

Ms Barrett said: “He is now in a much better, straighter position which will help reduce pain in his hips and spine.

“This not only supports his health but his safety too. I am 60 next year and not as agile as I was and I was increasingly concerned that I would trip over Dylan.

Newlife has helped 418 disabled and terminally ill children in the county, and is raising money for another 15 who need equipment worth a total of £8,736.

Stephen Morgan, Newlife’s head of charity operations, said: “It’s great we could help Dylan, but now we need to find funds to help the other Surrey children. So we are appealing to individuals, groups, clubs and companies to help us help them too.

This is republished article. Originally this article was published by http://www.getsurrey.co.uk

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