Jack’s story: Hospice care brought our family closer together
Jack, is 10 and has a rare and life-limiting neurological condition called Aicardi-Goutières Syndrome (AGS)....
Family stories
99,000 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.
Samuel’s story: Doctors have helped us plan for the worst, but each day I pray for a miracle
Samuel was born with his entire right pulmonary artery missing – a rare congenital heart defect that often goes undetected at birth. This meant he wasn’t diagnosed until he was four years old. Due to the nature of Samuel’s heart...
Children’s Hospice Week 2025: Gaby’s story
Evita’s daughter Gaby was born with half a heart – a rare condition called hypoplastic...
Nieve’s story: “At the end of her life we were alone”
Nieve was born in July of 2007, a happy and content baby, but it quickly...
Archie’s story: “I couldn’t live without their support”
This is Archie’s story, told by his mum, Laura. Archie was born extremely prematurely at...
Winter Appeal 2025: Alex – the boy who loved frogs
Alex was born with complex conditions that left him needing 24/7 care. Despite his challenges,...
Rafferty’s story: Support through the Kentown Programme
“We were giddy with excitement, laughing and being playful with the medical staff. We were...
Paulson’s story: “The Butterfly Fund helped us feel we weren’t alone”
Baby Paulson was welcomed into the world at only 24 weeks on 11 December 2023....
Leia’s story: “Having a diagnosis helped us feel prepared”
When baby Leia failed her newborn hearing test, first-time mum Katie knew something wasn’t quite...