Help Tom Toddle success

Thomas Jenkinson   PICTURE BY KATE SHEMILT C140943-1
Thomas Jenkinson PICTURE BY KATE SHEMILT C140943-1
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A LITTLE boy is one step closer to his dream of walking, thanks to the generosity of thousands of people.

Thomas Jenkinson has been offered a place at Great Ormond Street for selective dorsal rhizotomy (SDR) surgery in spring next year.

Tom, who is six next month, has quadriplegic cerebral palsy, restricting the use of one of his arms, confining him to a wheelchair and leaving him in almost constant pain.

Last year, his family, who live in the Chichester area, launched a campaign to raise £40,000 to send him to America for the surgery which could allow him to use his legs for the first time and free him of pain.

However, they were left shocked when Great Ormond Street accepted Tom for the operation.

“I was completely blown away,” said Tom’s mother Sarah.

“We never thought in our wildest dreams that we would be accepted in this country.”

Tom’s grandmother Hilary Flynn added: “We certainly didn’t go with any expectations, we know so many people have been refused and Tom’s not someone with a mild form of CP. We didn’t think there was much hope, but there was.

“You could have knocked me down with a feather.”

The operation still has to be privately funded, but removing the cost of travel to America means the family can add all their own savings to the pot and funding for the procedure is now secure.

It leaves them with just £5,000 to raise for the months of intensive physiotherapy needed following the operation.

“We are almost there, but we just need that last push,” said Hilary.

“It would be awful to have the operation and then not have enough money to do the follow-up you need.”

Tom was referred to Great Ormond Street by Dr Vivienne Campbell from Chailey Heritage Clinical Services.

Travelling to London, he went through an extensive series of tests before a panel of doctors approved him for the procedure.

“At one point we didn’t know if they were saying yes or no, I got quite confused,” said Sarah.

“I turned to Tom and said ‘I think they are saying you can have your new legs’. He was so chuffed, he was so happy – that is all he keeps saying now.”

However, Sarah was still unwilling to let her hopes get too high until the confirmation letter arrived earlier this month.

“Now we know it is going to happen, we keep having to say ‘You’re not going to be able to walk as soon as it’s happened, it is going to be a long, long time’,” she said. “But he will have use of two arms which is very exciting.

“He knows the effect he has from the Botox and the SDR is hopefully going to be like that, but for much, much longer.”

Speaking about her own reaction to the news, she added: “I was sobbing, I was just in a different world.”

Having the operation at Great Ormond Street also means Sarah and Tom won’t have to be separated from the rest of their family for almost two months – particularly Tom’s twin and best friend Sam.

“Tom does all Sam’s talking,” said Sarah.

“At least being in London, Rob can come up at weekends. We are such a close family, for us to have been separated for that kind of time would have really hard.”

Hilary added: “That was one of the biggest concerns, doing it from Sam’s point of view. He’s not a well child and he gets quite traumatised if Tom’s away for long.”

Although the operation has to be privately funded, Sarah hopes the hospital’s decision to proceed signals a change in policy from the UK’s primary care trusts and may eventually offer hope to other children with cerebral palsy.

“Tom’s kind of an experiment really, they said they don’t do many,” she said.

“If it means in five or ten years’ time any child with quadriplegic cerebral palsy can have the operation, that would be great.”

Goals

When the Jenkinson family first approached the Observer about the Help Tom Toddle campaign 11 months ago, they had two goals which would seem easily attainable for most children – for him to be able to use the toilet and move himself without help.

Selective dorsal rhizotomy offers Tom that chance.

“For the us the most important thing is for Tom to be independent, whether that’s walking or being self-sufficient,” said Sarah.

“Hopefully the new legs will mean he will be able to leave the wheelchair and walk with a frame. But even just transferring independently, anything above that is amazing.”

Perhaps even more importantly they wanted to free him of the muscle spasms which have left him in pain for much of his young life.

“Not to go up in the night and see his legs locked together when he’s in bed,” said Sarah.

“I think any parent would pay anything not to see their child in pain.”

Hilary added: “The main reason for doing it is to lessen or take out the pain and give him independence as he gets older. Anything on top of that is a bonus.”

Thanks for support

Residents from across the Observer area rallied behind Tom for the campaign, organising events and donating funds.

However, for newspaper staff it was particularly heartwarming to see the reaction of our readers and their enormous generosity.

Editor-in-chief Gary Shipton said: “We had hundreds of individual donations ranging from £1 to £500 and this collective support has made Tom’s operation possible.

“I am enormously grateful to everyone who contributed and immensely proud of the readers of this newspaper who have performed a small miracle in this young boy’s life.”

Still time to donate

The end may be in sight, but there is still time to donate to help the family reach their final target.

To donate to Tom’s Toddle Fund, visit www.justgiving.com/teams/helptomtoddle.

Alternatively, you can drop a cheque into the main Observer office: Sheena Campbell, Unicorn House, 8 Eastgate Square, Chichester, PO19 1JN, made payable to Thomas Jenkinson.