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Juvenile Batten Disease

Juvenile Batten Disease

Discovering that three of their children have the devastating, rare condition juvenile Batten disease has, says mum Dee, left the family feeling numb.

Read Toby, Corey and Izzy's story


Lily's story

BPAN

Lily was only five years old when she was diagnosed with the rare, disabling and life-shortening condition known as beta-propeller protein-associated neurodegeneration or BPAN. " We were just totally devastated,” says her dad Simon.

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Small steps, big breakthroughs

Action Medical Research is the leading UK-wide charity funding vital research to help sick and disabled babies, children and young people. Please watch and share this film..

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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.

Read Alfie's story


Tom's Story - Duchenne muscular dystrophy

Duchenne muscular dystrophy

Tom has Duchenne muscular dystrophy, a rare and fatal condition that causes muscle weakness, and a relentless deterioration in physical abilities.

Read Tom’s story


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