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.
'Bereavement' family stories:
When Daniel was nine months old he was diagnosed with a brain tumour. He underwent surgery to remove the tumour but his parents were told that it was a very rare, aggressive tumour and it was unlikely to respond to chemotherapy. His family decided to take Daniel home. So he could spend the rest of his life in the loving environment of the family home.
Lewis was diagnosed with an aggressive childhood cancer called Neuroblastoma when he was less than a year old. Lewis took his treatment in his stride, charming every nurse and always smiling. In 2010 Lewis’ family were given the devastating news that he could not be cured.
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.