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. That’s one in every 270 children—the equivalent of one in every school.
Hearing the news that your child has a life-limiting condition and is likely to die young is devastating. It’s an incredibly distressing and confusing time. These children have very complex and unpredictable conditions and often need round the clock care, seven days a week.
Meet some of the families.
'Children's hospice' family stories:
Henrique is a lovely, lively toddler who likes playing with his building block and games of hide and seek with his big brother. He was born with cystic hygroma and brocheo-tracheal malacia.
Vital respite and short break care has been life-changing for Dougie, Beth and Antony.
8-year old Zoë has osteopathia striata with cranial sclerosis (OS-CS), a rare genetic bone dysplasia which causes motor skills developmental delay. She also uses a tracheostomy to help her breathe. She also has a rare disorder called Moyamoya, which causes chronic headaches and mini-strokes.
Mum Keely and dad Curtis had just 19 days with their baby daughter Tallulah but their local children’s hospice helped them capture precious family moments.
Kaychanel and her family access care and support from East Anglia’s Children’s Hospices (EACH). Kaychanel has a condition called Vacterl Sequence and also has a tracheostomy.
After eight years of trying for a baby, Cath and Colin were over the moon to be expecting a daughter. But a scan revealed there were problems. Helaina was diagnosed with Costello Syndrome. Her mum shares their story of 24/7 care.