Zuzanna’s Story
Today is Undiagnosed Children's Day, and we're teaming up with SWAN UK (syndromes without a...
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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...
Orla’s story: a lovely, cheeky little girl
In her first years of life, Orla had cardiac arrests at home with her terrified...
Caleb’s story: support for the whole family
We shared this story as part of National Siblings Day 2018 to highlight the special...
Frank’s story: the most heartbreaking news
In October 2012, Frank's parents Rachel and Bob were given the worst imaginable news. A neurologist...
Florence’s story: our princess
Parents Bianca and Jack made the heartbreaking decision to spend their daughter Florence's last few...
Stanley’s story: living with love
Diagnosed with the rare condition Tay Sachs at just 13 months, Stanley Murphy has no...
Harry’s story: our lovely sparky boy
Nothing prepared Harry's parents for the day they were told that their son, aged just...
David’s story: just follow the child
"Like births, all deaths are different, and reflect the infinite variety of medical, personal, emotional...
