Bristol boy needs America trip to help him walk unaided

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Monday, March 15, 2010
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This is Bristol

A Bradley Stoke boy will fly out to the US for a £36,000 operation so he can walk.

Five-year-old Toby Cox has a form of cerebral palsy called spastic diplegia, which affects his whole body but particularly his legs.

He can only walk with the use of his walker or splints and suffers pain as a result of the condition.

There is no treatment available to help him on the NHS, so travelling to America for the surgery is the only option.

Family and friends are now working hard to raise the money for the selective dorsal rhizotomy (SDR) operation in June.

The family will pay for the flight and a month's accommodation themselves and are raising the money to fund the procedure.

Toby's mum Donna, 39, suffered food poisoning when she was pregnant with him and this led to him being born 10 weeks early by emergency Caesarean.

Mrs Cox said: "Toby was very poorly when he was born and it was nine minutes before they could get oxygen into him so I was told there would possibly be some issues.

"Then when he was five months old he was diagnosed with spastic diplegia cerebral palsy.

"Toby gets a lot of pain, muscle cramp and spasms in his leg and if he has had a really bad day he can be up at night needing massages and having cream rubbed into his legs. His whole body is affected but his legs are the worst."

The youngster is looking forward to having his legs fixed so he can do the things his friends can.

Mrs Cox, who works for Balfour Beatty, said: "When he tries to do anything with any precision, Toby appears quite clumsy. He can't play on play equipment like his friends he can't keep up with them.

"Cognitively he's right up there. He has no learning disabilities or behavioural issues. He is such a laid-back, happy little boy."

The family heard about another little boy who had undergone the procedure and Mrs Cox and husband Ian carried out some of their own research on the internet.

Mrs Cox said: "We spent an awful lot of time investigating what was going to be the best option.

"No one knows a lot about SRD here and no one offers it to you and all the information they quote you is quite antiquated."

Toby, who attends Holy Trinity Primary School in Bradley Stoke, will go to St Louis Children's Hospital for the procedure, which involves cutting some of the nerve fibres between the muscles and spinal chord.

The operation takes about four hours to complete, with the neurosurgeon going in through the back and testing the nerves with electrical impulses to work out which ones are acting abnormally and should be cut.

Mrs Cox said: "They will leave the normal ones and then the spasticity will be gone and that is what Toby is fighting all the time.

"When he wakes up he will initially feel like he has legs that are not his own but he will have physiotherapy and then be able to walk again like you and me.

"Toby will be able to walk independently, which is a really big thing because he can't walk at all outside without his walker. And he will be able to participate with his friends in recreational sport. When we saw that written down in a letter to us it was unbelievable."

To arrange the surgery in the US, the family had to send X-rays and even had to upload a video to film-sharing internet site YouTube so the surgeon could see Toby's walking.

Mrs Cox said Toby's brother Louis, 11, is particularly excited about him having his legs "fixed".

The family has organised a ball and a host of fund-raising events.

Mark Hadfield, 38, of Bradley Stoke, learned about Toby's operation through his son Harry, who is in the same class. He has roped in colleague from Red Rock recruitment consultancy, James Grogan, 30, to cycle from Llandudno in North Wales, through Snowdonia to Chepstow for the cause.

To support Toby's family and find out about events, visit www.helptobywalk.com.

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