Bristol youngster Toby can walk at last after US operation

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Thursday, September 02, 2010
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This is Bristol

IT would be one small step for any other five-year-old but for Toby Cox it is giant leap forward.

As he takes a few steps his mum and brother celebrate as if he has completed a marathon.

For Toby could not walk unaided until several weeks ago, when he had revolutionary surgery in the US.

Toby's surgery involved cutting nerves between his spinal cord leaving only those which work properly.

The Bradley Stoke youngster was born with a type of cerebral palsy called spastic diplegia which affected his whole body, but particularly his legs.

Family, friends and total strangers rallied round to raise the £36,000 needed to pay for the operation in St Louis.

The youngster had run out of options for treatment on the NHS and relied upon a walker and leg splints to get around.

His parents were told that eventually Toby would need a wheelchair, but having seen television footage of another child who had undergone surgery in America, they realised there could be another option.

Selective dorsal rhizotomy (SDR) involves a neurosurgeon testing the nerves with electrical impulses to work out which ones are acting abnormally and should be cut. The others are left intact so they can work without constraints.

It is not available in the UK, but the surgeon in the US looked at X-rays and a film of Toby uploaded onto the YouTube internet site and was optimistic that the youngster would be a suitable candidate.

"Toby was in pain every day. His muscles were tight, he had cramp and his legs were twisted," said mum Donna. "But now his legs are like mine or yours.

"We had run out of options on the NHS – botox and physio were the only things left. Toby could never have botox again after he had a possible reaction and suffered major convulsions."

The family, which includes dad Ian and 11-year-old brother Louis, spent five weeks in St Louis in June and July.

Mrs Cox, 39, said: "On day three after the operation they started getting him out of bed, doing physio, and since then he has made progress every day.

"He will walk properly, there is no doubt about that, it just might take time. It is absolutely amazing."

Now Toby is getting used to the feel of his legs, which are no longer bound by tight muscles and spasms, and starting to play ball games as his balance improves.

Asked how his legs feel now, Toby's reply is "comfy".

Most of Toby's independent walking remains indoors at the moment while he gains confidence. Sometimes he needs a wheelchair or sticks for longer trips because he gets tired.

He was looking forward to returning to Holy Trinity Primary School where he will be able to sit cross-legged alongside his schoolmates rather than in a special needs chair.

There are still months of physiotherapy ahead for Toby.

"The physios over here are absolutely amazed," said Mrs Cox. "They've never worked with a child who has what Toby has and have been blown away by the fact he's totally different now."

Extra money raised through the appeal has gone to Toby's physiotherapy and gym equipment so that he can strengthen his leg muscles and practice walking on the treadmill, often helped by his big brother.

Mrs Cox said: "People were still very generous, even after we reached the target so we have been able to buy all the equipment we need for him."

Proud big brother Louis said: "It is amazing because before Toby was in a wheelchair and when we went out people would stare at him and I can't imagine how that would feel. He wanted to walk around like everyone else and now he can."

Mrs Cox hopes that in the future the NHS will bring SDR surgery to the UK.

"It has been amazing for Toby to go through this so he does not go through life with daily pain."

Mrs Cox has been writing a regular blog updating fundraisers on Toby's progress. For more information visit helptobywalk.com.

The family of another Bradley Stoke child, Abigail Newton Smith, are now fundraising for the same operation in America having learnt about the surgery from Toby's campaign.

For more information visit footsteps4abigail.com.

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2 Comments

  • Profile image for This is Bristol

    by Sue, Kingswood

    Thursday, September 02 2010, 5:10PM

    “What a wonderful story. I hope things improve for young Toby even more as time goes by x. Well done to everyone who raised the huge amount of money to give the little lad a chance aswell”

  • Profile image for This is Bristol

    by Solomon, Posh end of 'Artcliffe.

    Thursday, September 02 2010, 8:05AM

    “A very sincere 'Well Done' to Toby, Louis and Mum and Dad. You have worked hard for the answer and deserve success.

    Your efforts will no doubt point other sufferers in the right direction and enhance lives forever. A pat on the back for the surgeons too.”

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