Real stories | Action Medical Research

Real stories

Lily's story


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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Iris and Tom’s story

Pre-eclampsia and premature birth

Eva's story


Aiden's story

Hypoxic-ischaemic encephalopathy (HIE)

Sophie's story


Noah's story

Landau Kleffner syndrome

Sophia's story

Pregnancy complications and premature birth

Ioan's story

Tourette syndrome

Toby, Corey and Izzy's story

Juvenile Batten Disease

Jessica's story

Hypoplastic Left Heart Syndrome (HLHS)

Joey's story

Brain cancer

Henry's story

Down syndrome

Skye's story

Brain tumour

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