A Sussex family has spoken about the significance of medical research into cerebral palsy funded by a Horsham based charity.
Action Medical Research has funded a number of projects that aim to improve the lives of children with cerebral palsy, including the development of new types of MRI scans and the search for new ways to encourage brain repair.
Horsham resident Samantha Buck’s nine year old son Alfie is severely affected by cerebral palsy.
For Sam, research like the studies funded by Action Medical Research has huge significance, since the impact of cerebral palsy on children and their families can be so great.
Alfie is a lively boy who loves jokes and playing tricks on people. He is quadriplegic, which means that all his limbs are affected. He also experiences dystonia, which causes uncontrollable, repetitive and sometimes painful movements which is distressing for Alfie and for those who love him.
Sam said: “He’s a cheeky boy who always wants to have fun.
“Alfie suffered devastating brain damage at birth.
“His muscles and his brain cannot ‘talk’ to each other so he is unable to control the way his body moves.
“Even sitting in his wheelchair is difficult for him because his back arches, his whole body contorts and there is nothing he can do to stop it.
Family life revolves around medical appointments and managing Alfie’s day to day care.
Carers come to the house, which has been adapted to meet Alfie’s needs.
“People often ask me how Alfie’s sister Jessica and brother Lewis cope with our family life, but the truth is they’ve never known anything different,” Sam said.
“They are used to me focussing on Alfie but it’s hard not being able to do things with them.”
Sam is keenly aware of the many barriers her son faces.
As well as caring for Alfie and looking after her family, Sam campaigns tirelessly for a better life for disabled children.
She met Samantha Cameron and Dr Dawn Harper, an Ambassador for Action Medical Research, in Downing Street as part of the Changing Places initiative for acceptable toilet facilities. Sam has also met NHS trustees.
She said: “Wherever I see red tape, I want to cut it.”
“When you see your little baby being laughed at or ignored, it certainly gives you the impetus to change things.
“I simply want Alfie to be included in society and accepted, without people staring. I want him to be able to enjoy a theme park ride and go to the toilet with dignity.”
Sam is determined that Alfie won’t miss out, although it can feel that as he is growing, the world is starting to seem even less accessible.
On this year’s family holiday, she plans to keep an ‘accessibility photo log’ showing the barriers Alfie faces, and is working to highlight the need for hoists on aeroplanes and in airports.
“We are going on a cruise liner because, due to Alfie’s severe physical disabilities, plane travel is simply not an option for our family at the moment,” she says.
Alfie already uses his eyes to communicate at home and at school to express his needs, feelings and sense of humour. Technology that tracks eye movements will be vital to his future, says Sam.
She said: “Alfie uses his eyes to point to stuff he needs.”
“So, if he is thirsty and ready for his dad to give him his cup of tea, he waits for him to come into the room, and engages him by looking at him intensely, then looking at his cup of tea, then back to his dad. So then Dad asks, ‘Are you ready for your cup of tea now?’ Alfie will reply by either looking at his YES and NO symbols or by a smile and head shake.”
In addition to MRI scan developments and the team of specialists hoping to find ways to encourage brain repair, Action Medical Research is funding a new study to help children with cerebral palsy is set to begin in December.
The aim is to assess learning abilities in children with cerebral palsy who, like Alfie, are unable to speak – leading to more accurate and more easily shared information about each child’s abilities.
Sam said: “Even if Action Medical Research’s work does not help Alfie in his lifetime, it could help other families in the future.
“Especially if it means they can continue to care for their child at home rather than having to consider residential care.”