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.
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 became apparent in weeks that things weren’t right: “Nieve didn’t hit normal milestones like other babies and toddlers. She didn’t develop the usual skills or...
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...
Children’s Hospice Week 2025: Gaby’s story
Evita’s daughter Gaby was born with half a heart – a rare condition called hypoplastic...
Aidan’s Story: Hospice care was a game changer for our family
Aidan is eight years old and lives with cerebral palsy, epilepsy and severe gut dysmotility....
Isaac’s story: “Our first soft play, first swimming, first days out all happened here.”
Isaac lives in Essex with his mum Lucy, dad Niall, brother Riley and sister Scarlett....
“Go once with an open mind” is this mum’s advice to other SMA parents wondering if hospice care is right for their child
We’ve been blown away by all the incredible stories of hope and determination that are...
Paul’s story: Our most precious moments with Kalel
Kalel was born with complex medical needs and received seven years of support at Derian...
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...