Alfie's Story | Cerebral palsy | Action Medical Research

Alfie's story

Cerebral palsy

Alfie is a lively nine-year-old who 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.

“Alfie is a bright, funny boy. He understands us, but it’s hard for us to understand him,” Sam explains.  “If he is crying, sweating or having spasms, then we know he is in pain.”

Action is supporting research to help children with cerebral palsy. At the University of Edinburgh a team of specialists hopes to 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 are developing new types of MRI scan to help predict children’s future needs with greater accuracy. And Dr Michael Clarke, also of University College London, is leading 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.

You can read more about Alfie in Research Review.

 

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