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.
Dylan’s story: Palliative care gave us choice
When Sarah and Will’s son Dylan was diagnosed with the rare neurodegenerative condition Sandhoff disease at 18 months old, their world changed overnight. The first signs of Dylan’s condition didn’t appear until he was six months old. It started with...
Time together: Cal’s family break at Center Parcs
Cal’s mum, Gemma, describes him as “a funny, smart teenager with a mischievous sense of...
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....
“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...
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...