A Twickenham family whose six-year-old son suffers from cerebral palsy have launched a campaign to get him to America for vital surgery.
Kate and Gareth Maberley, who live in Railshead Road, need to raise £50,000 for their son Jonny to travel to St Louis Children’s Hospital in Missouri.
Jonny, who is in year 2 at Orelans Infant School, was born with quadriplegic cerebral palsy, a neurological disorder which means all his limbs are affected by a tightening of the muscles that severely limits his movement. It also affects his speech.
Mrs Maberley, 29, a nursery practitioner, said: “We found out just before his first birthday. After a couple of months we noticed he wasn’t developing like other children. When we finally got the diagnosis it was devastating. For them to sit down and tell us it was cerebral palsy – it was complete shock.”
Although he travels in a wheelchair and struggles to hold a pen, Jonny has not allowed his disability to restrict him, attending a mainstream school where he is an enthusiastic member of maths and science clubs.
As he gets older, however, the effects of the tightening will become more severe, which could leave him struggling to co-ordinate his movements.
This can be prevented by a type of surgery known as selective dorsal rhizotomy, which is offered by Dr T S Park in America and may even be able to improve Jonny’s current condition.
Dr Park has performed more than 2,000 of the operations since the 1980s and has a 100 per cent success rate.
Last month, the family launched a website to try to raise enough money for Jonny to have the operation. It has already had thousands of hits and attracted interest from across the world. Major Niall Stokoe, a soldier in Afghanistan whose daughter attends Orleans, ran a half-marathon on New Year’s Day in aid of the cause, while another man contacted the family to organise a charity motorbike ride.
Mrs Maberley will be doing a sponsored sky-dive in Easter and her husband, 30, who works at Heathrow, is organising a bicycle ride from Paris to London, with at least 10 people taking part.
Parents at Jonny’s school have also donated more than £1,000 towards the appeal.
“His school is completely amazing, he’s like a mini celebrity there,” Mrs Maberley said. “It was other parents there who helped us set up the website and get the campaign off the ground. We all just want to give him the best chance in life.”
For more information or to donate, visit jonnysjourney2012.com.
By Jessica Abrahams. Originally published in the Richmond & Twickenham Times, January 9th 2012. View here.