Alfie's story

Alfie loves jokes and playing tricks on people. “He’s a cheeky boy who always wants to have fun,” says mum Samantha. But for Alfie, who has cerebral palsy, having fun is a daily struggle.

“Alfie suffered devastating brain damage at birth,” Sam explains. “His muscles and his brain cannot ‘talk’ to each other so he is unable to control the way his body moves.”

Alfie has quadriplegia, 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.  Alfie can see and hear, but he is profoundly affected in terms of physical movement, and cannot speak.

Action is supporting research to help children with cerebral palsy. At the University of Edinburgh a team of specialists has been working to try and find new ways to encourage brain repair, and so improve movement and co-ordination which, it is hoped, could have great benefits for children like Alfie. At University College London doctors have been working to develop new types of MRI scan to help predict children’s future needs with greater accuracy. And Dr Michael Clarke, also of University College London, led a study to help children who are severely affected by cerebral palsy and who use their eyes to communicate by developing a new way to assess and classify children’s looking skills and create an eye-pointing scale.