Together for Short Lives
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Family stories

49,000 children and young people are living in the UK with health conditions that are life-limiting or life-threatening – and the number is rising. Meet some of the families we support.

Lisa’s Story: Julia’s House saved my marriage 

Lisa Johnston and her husband, Jason, live in Dorset with their five children. Their youngest child, Kitty, eight, has Kabuki Syndrome, a rare genetic disorder that affects her muscle tone and mobility. She also suffers repeated infections and kidney problems that need...

Zuzanna’s Story

Today is Undiagnosed Children's Day, and we're teaming up with SWAN UK (syndromes without a...