George’s story: “They were at the house when we needed them, day or night, and were always at the end of the phone”
George was born with an extremely rare condition called Batten Disease variant CLN8. This causes...
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.
Isabelle’s story: “They took all the strain away and made sure that we could make the most of the time we had with Isabelle”
Isabelle was just a baby when she was diagnosed with Zellweger Syndrome. A very rare...
Lady Tiffany’s story: “I lived in the hospital for three years”
“When I look back now I remember only pain and guilt,” says Stacey, Tiffany’s Mum....
Mikey’s story: Mum Chevonne and dad George are exhausted.
Every day is a bit different with Mikey, he has an undiagnosed condition which was...
Ted’s story: “The time at home meant we got to make such amazing memories with Ted”
Ted was born three months prematurely in May 2017 weighing just 1lb 9.5oz. He wasn't...
Timmy’s story: “When we were discharged we had to manage alone.”
Timmy had cerebral palsy, a learning disability and epilepsy. His mum Alison explains his condition,...
Emily’s story: “Every little moment”
When Emily was born with a severe heart condition, the doctors told family to take...
Emily’s Story: “Whilst praying for a future, we also had to prepare for the worst”
Everyone who met Emily was instantly captivated by her bright smile and inquisitive eyes. At...