Touching Lives - September 2015
Action for children like Alfie
Alfie suffered devastating brain damage at birth and has severe cerebral palsy. He is a bright boy who loves jokes but having fun can be a daily struggle. Sadly, he is often in pain and family life revolves around medical appointments and managing his day-to-day care, as mum Sam explains.
Now eight, Alfie has quadriplegia, which means all his limbs are affected. “His muscles and his brain cannot ‘talk’ to each other so he is unable to control the way his body moves,” explains Sam. “He also experiences dystonia, which causes uncontrollable, repetitive and sometimes painful movements. 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,” she says.
Around 2,000 babies in the UK are diagnosed with cerebral palsy each year. It is the most common physical disability affecting children and can impact in many different ways, causing varying degrees of disability.
Sadly, pain has been a distressing feature of Alfie’s young life right from birth. His delivery was traumatic and medical staff knew straight away that he had suffered massive brain damage due to oxygen deprivation. He was very ill and was rushed to a specialist unit where, after life-saving treatment, he stayed for six weeks.
As a baby he needed seven types of muscle-relaxing medication, four times a day, but was still inconsolable. “He screamed constantly until he was two and a half. Even now, people still remember the crying,” Sam recalls.
Alfie can see and hear, and does not have learning difficulties but he cannot speak. Instead he communicates using eye-tracking technology. “He is a bright, funny boy,” says Sam.
“He understands us, but it’s hard for us to understand him. It took a long time for the family to realise this.”
The pain and stiffness Alfie experiences, and the effort it takes to engage with activities, make education a challenge. “Even though he goes to a specialist school, a full day is not usually possible,” says Sam. “He is monitored closely. If he is crying, sweating or having spasms, then we know he is in pain.”
Caring for such a profoundly disabled child is a daily challenge which, as he gets bigger, becomes harder. After years of struggling, the family have finally been able to adapt their home to meet Alfie’s needs and carers come to help him on a regular basis.
“He cannot sit for long, so we lie him down on a cushioned area. It is a struggle to feed him and help him to drink enough,” says Sam.
While he is doted on by his older siblings, Jessica and Lewis, Sam recognises that the complex nature of Alfie’s care affects them too: “They’ve never known anything different, but it’s hard not being able to do things with them,” she says.
As well as caring for Alfie and looking after her family, Sam also campaigns tirelessly for a better life for disabled children. She has campaigned for the Changing Places initiative for acceptable toilet facilities and has also met NHS trustees.
“Wherever I see red tape, I want to cut it,” she says with a wry smile. “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.”
For Sam, research like that being funded by Action has huge significance: “Even if this work does not affect 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.”
Action has funded many projects that aim to improve the lives of children with cerebral palsy, as well as work to prevent brain damage which can cause the condition. We have recently awarded grants totalling almost £450,000 to fund two new projects.
Dr Veronique Miron, of the University of Edinburgh, believes it may be possible to stimulate natural healing processes in the body to help repair the damage that causes the symptoms of cerebral palsy.
“Our ultimate goal is to develop new medicines that can repair damage within the brain and ease children’s movement problems,” she says.
The second project, led by Dr Jennifer Ryan at Brunel University, London, is investigating whether an exercise programme to strengthen the calf muscles can help make walking easier for teenagers with the condition.
Many young people with cerebral palsy can walk unaided but it takes more effort and they can tire easily meaning keeping active can be a challenge. Sadly these walking difficulties can worsen with age and this can increase the risk of developing heart disease and type 2 diabetes as adults.
If the exercises prove beneficial, it could lead to improvements in the physiotherapy offered to teenagers and provide a programme they can continue to perform independently.
“We hope our work will enable people with cerebral palsy to stay fit and healthy for as long as possible, and improve their general level of wellbeing.” Dr Ryan says.
Dr Miron's project is generously supported by The Rooney Foundation and Dr Ryan's is jointly funded with the Chartered Society of Physiotherapy Charitable Trust.