49,000 children and young people are living in the UK with health conditions that are life-shortening 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-shortening 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.