A LITTLE boy has just one wish for his birthday this week – to raise enough money for an operation to help him walk.
Thomas Jenkinson’s family are desperately trying to raise the £40,000 needed to pay for selective dorsal rhizotomy surgery in America before next summer.
They hope the surgery will allow Thomas, who has quadriplegic cerebral palsy, to move around more independently.
Because his cerebral palsy crosses both sides of his body, he will probably need to use sticks to walk even after the operation.
However, his family has a simple aim – for him to be able to use the toilet and move himself without help.
“He’ll never be able to walk completely unaided, we know that,” said his mum, Sarah Jenkinson, from Chichester.
“We need to be realistic because Tom’s cerebral palsy goes across him, he has one good arm and one good leg on different sides of his body.
“Our aim is that he can transfer himself without anybody’s help. If he could just walk into this room and leave the wheelchair at the door that would be everything to us.
“For him to be able to have a shower or go to the toilet on his own, not so much now but when he is older.”
Thomas’ dad, Rob, added: “It is just the mundane things that you take for granted.”
Help stop the pain
They want Thomas, who turns five next week, to have the surgery as soon as possible as it appears to work best on young children.
“It seems to be the earlier you have it done, the easier it is,” said Sarah.
Another reason for the operation is the high levels of pain Thomas endures.
He has Botox injections every six months to help with the spasticity of his muscles, but Sarah and Rob say the effects are wearing off more and more quickly.
“He obviously is in a lot of pain a lot of the time,” said Thomas’ grandmother, Hilary Flynn, from Felpham.
“If it could take away 50 per cent of his pain that would make a huge difference to his quality of life.
“It must be so difficult to be uncomfortable and not be able to move yourself, to have to ask someone to move your position.”
Cerebral palsy diagnosis
Thomas and his twin brother Sam were born on November 27, 2008, at 26 weeks and two days.
Initially, Thomas appeared to be the stronger twin, weighing 1.4 kilos (3lb) compared to Sam’s 800 grammes (1.8lb).
The pair spent three months in hospital, first at Portsmouth and then at St Richard’s Hospital, in Chichester.
When they were finally able to come home, the family were supported by the Snowdrop Trust because Sam was still on oxygen.
“Snowdrop was fantastic,” said Sarah. “I wouldn’t have got through it without them.”
When the twins were 11 months old, tests showed Thomas wasn’t developing physically and he was diagnosed with quadriplegic cerebral palsy.
“We have been fighting to help him ever since,” said Sarah.
After Thomas’ diagnosis, Sarah was told about Ingfield Manor, in Billingshurst, which supports children with disabilities and their parents, by Bethany Chiddle’s mum, Kerry.
“They teach you a lot of techniques to help you cope with a child with different needs, it is amazing,” said Sarah.
“It doesn’t matter how severe your child’s cerebral palsy is, or how non-severe, every child is treated individually to give them the best therapy for their needs.”
A special bond
It was at Ingfield that Thomas met other children with cerebral palsy, several of whom have now had the operation his family is trying to raise money for.
“He keeps saying to me ‘When am I getting my new legs?’ It is very difficult,” said Sarah.
Thomas still attends Ingfield two days a week, but he also now attends Parklands Primary School, in Durnford Close, Chichester, with Sam.
“He is doing really, really well at school, all his cognitive abilities are great,” said Sarah. “Parklands have been really good and they don’t treat him any differently.”
Being at Parklands also means he gets to spend more time with Sam.
“They are best friends,” said Sarah. “They have a really good relationship, Thomas is really talkative and Sam is very, very shy, so they complement each other.
“They just care so much about each other.”
Sam has chronic lung disease, but his brother is on hand if he needs help.
“If Sam starts to feel ill, Tom will shout to get someone’s attention,” said Sarah.
“It has always been like that, taking care of each other.”
Thomas is also supported by his older brothers and sisters, Olivia, 13, William, 15, and Matthew, 21. He also has a new friend – border collie puppy Buster.
“As Thomas gets older, if he is nervous about going somewhere, he will always have someone to go out with him,” said Sarah.
Tom’s Toddle Fund has already been boosted by family and friends with more than £6,500 raised. The family has also raised enough money to cover all Sarah’s expenses, meaning all money raised will go towards Tom’s operation.
Football fans gave the appeal a boost during a charity match between Bognor Regis Town FC and Portsmouth FC.
“The Portsmouth supporters were really nice and Bognor Regis Town FC have been amazing,” said Sarah.
“They have not only raised money, but also given up their time.”
Now, however, the family is trying to raise more awareness in a bid to reach the fundraising target.
“We just feel like there is only so much you can ask friends to do,” said Sarah.
“You don’t have to give us money, it can be about ideas or raffle prizes or just anything,” said Hilary.
To donate to the Tom’s Toddle Fund visit www.justgiving.com/teams/helptomtoddle and join the team, alternatively you can text TOMS98 to 70070, donating anything from £1 to £1,000, or drop a cheque into the Observer office made payable to Thomas Jenkinson.