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.
'Infant (0-5)' 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.
Stanley is two years old and has Tay Sachs. His condition means he cannot move and must lie flat, yet he has to be three years old before his family can get the funding needed for a specially adapted car.