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.
16-year-old Josh was fit, sporty and unassuming. He’d had no significant health concerns, until one day the family’s world came crashing down. Mum Caroline shares their story.
The day following the birth of their first child, Cerys's parents were devastated to learn that Cerys had Edwards Syndrome with a prognosis of a few months.
Lisa's story: Julia’s House saved my marriage
Lisa Johnston and her husband Jason live in Dorset with their five children. Their youngest child, Kitty, eight, has Kabuki Syndrome, a very rare genetic disorder which affects her muscle tone and mobility. She also suffers repeated infections and kidney problems that need emergency hospital treatment. Here Lisa talks about how short breaks from her local children’s hospice kept her family together.
The Apps Family
After a routine pregnancy, Nick and Vanessa Apps were told the devastating news that their little girl, Sophia, would have a short life.
Frank was an energetic three-year old when he started developing the symptoms of Late Infantile Batten Disease, a rare, incurable, neurodegenerative condition that has left him in need of 24-hour-a-day care.
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.
"Grace is making progress, slowly. She’s heading in the right direction; it’s just time"
Read about Iwan's experience of transition, as told by his mum.
Mithun is 24 and has Duchenne Muscular Dystrophy. At 18, he began his move to adult services. Read Mithun's story in his own words.
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.