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.
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.
Meet Effie, the face of our Christmas appeal this year.
12-year-old Ruby has got various symptoms which have developed over many years. She has lots of diagnoses, but no defined condition, which means her symptoms are difficult to manage.
David, DD as his family called him, was diagnosed with a cancerous brain tumour, aged 11 and died when he was 16 years old. David’s mum, Sacha, describes how her family chose to support her son at home once treatment was no longer available.
Vital respite and short break care has been life-changing for Dougie, Beth and Antony.