Observer campaign is launched to help Toby

ks1500076-2 'Ian and Jess Booker with their children Toby, six, and Harry, two
ks1500076-2 'Ian and Jess Booker with their children Toby, six, and Harry, two

YOUNG Toby Booker would love to run with his friends – and continue to do so into his teenage years.

Right now, the six-year-old can manage a few steps but his muscles very soon start to ache, due to cerebral palsy.

Parents Ian and Jess Booker spoke about Toby’s neurological condition in last week’s Observer and explained their bid to raise £40,000 for selective dorsal rhizotomy at Great Ormond Street Hospital in London.

This week, the Observer launches a campaign, Help Toby Run With His Friends, to support their fundraising efforts.

Ian and Jess, of Havelock Road, Bognor Regis, said: “Toby can walk short distances unaided, with a wobble, but would love to run and play sports with his friends.”

The operation will be life-changing, helping to reduce Toby’s muscle stiffness and allowing him to move around without his walking frame and wheelchair.

ks1500076-6 Toby Booker, six

ks1500076-6 Toby Booker, six

Jess explained: “The doctors have said that when Toby gets to 14 or 15, and his body gets bigger and heavier, his legs will be unable to take his weight any more.”

Without the operation, it is likely Toby would be permanently in a wheelchair when he reaches his 30s and 40s.

Toby said: “I love football, Beavers and swimming. There is one difficulty, I have cerebral palsy. This means that I can’t walk like others.

“I was born very early and my brain sent the wrong messages to my muscles in my legs so they are very tight. My legs hurt sometimes. I have had lots of things done to my legs to help them, but it only helps for a short time.

I love football, Beavers and swimming. There is one difficulty, I have cerebral palsy. This means that I can’t walk like others.

Toby Booker, six

“Great Ormond Street have put me on their waiting list for selective dorsal rhizotomy, an operation used to improve spasticity in cerebral palsy.

“The problem is the NHS only fund a few of these operations, so I am having to raise £40,000. Please help me to run with my friends!”

Friends and family already have a host of fundraising ideas lined up, including the Bognor Prom 10k race on Sunday and Discovery Run half marathon at Petworth Park on Saturday, May 30.

Toby goes to Barnham Primary School and his young friends there are also getting involved. A group of ten boys and girls have planned the Barnham Mini Dream Team 5k Walkathon, which they will complete in fancy dress on May 23, 2pm-4pm, to raise money.

Clare Drew, Vanessa Berney and Julie and Carl Fivash are taking part in the 5k Mud Monster Run on June 7, while Dan Edwards and Tom Wrapson will tackle the 10k version the same day.

A family fun day, Fun For Toby, will be held at Funtingdon Primary School, where Jess is a teacher, on September 19, and staff from the school will take part in the Fishbourne Flat Five on September 20 to raise money for Toby’s campaign.

So far, £2,435 has been raised in 17 days.

Visit www.gofundme.com/skc58k to make a donation or visit www.tobybooker.co.uk to find out more about Toby.

More about the operation

Selective dorsal rhizotomy (SDR) is an operation used to improve spasticity in cerebral palsy.

Cerebral palsy occurs when a child sustains a brain injury early in life. This usually happens before birth but can happen around the time of birth and even in the first year of life. Although the brain injury does not get any worse, the difficulties it causes change continuously in the growing child.

One of the most common causes of cerebral palsy is prematurity. Certain parts of the premature brain are vulnerable to damage, particularly the parts which control leg movement and co-ordination. In turn, this leads to excessive stiffness or spasticity in the leg muscles and can impair the child’s ability to learn to walk.

Spasticity also causes pain and, over time, shortening of muscles and tendons, joint contractures and bone deformities. Spastic diplegia (which affects the leg muscles more than the arms) is the most commonly occurring type of cerebral palsy. Nerve fibres running from the muscles back to the spinal cord play a major role in maintaining this muscle stiffness.

SDR, by dividing some of these fibres, is very effective at reducing stiffness and spasticity.

SDR is carried out while children are under general anaesthesia and takes around four to five hours. A skin incision is made in the upper lumbar spine. The spinal canal is opened at only one level. An ultrasound probe is used to identify the lower end of the spinal cord. Under the operating microscope, the membrane covering the spinal cord is opened and the lower end of the cord, with the sensory roots entering it, is identified.

Each of the sensory nerve roots is then subdivided into four or five rootlets. Each rootlet is stimulated to identify the ones that contribute most to the spasticity. These rootlets are then divided. The process is repeated for all the other nerve roots, from L1 to S2, on both sides, aiming to divide 50 to 70 per cent of the sensory roots.

At the end of the procedure, the membrane covering the spinal cord is closed again, the back muscles are returned to their original position and the skin is closed with dissolvable stitches. Children are then in hospital for about three weeks and then discharged with an intense physiotherapy programme.

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