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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


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.

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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.

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Alex and Daniel's story

Smith-Lemli-Opitz syndrome (SLOS)

Brothers Alex and Daniel have issues related to autism, eating and digestion. Alex was also born with curvature of the spine and Daniel with a hole in his heart. Finally, all their symptoms were explained by a diagnosis of a rare condition.

Read Alex and Daniel's story


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