We estimate that there are 49,000 children and young people across the UK who are unlikely to reach adulthood. Families caring for these children - often 24 hours a day, seven days a week – are under enormous emotional, physical and financial strain. These are ordinary people leading extraordinary lives.
Meet some of the families.
Amber's mum, Caroline, tells her story and how The Pepper Foundation have helped put the 'normal' back into her life.
Ciara's dad Grant tells the family's story about what it's like to care for a child with Epidermolosis Bullosa and the invaluable support they receive from their local hospice.
After eight years of trying for a baby, Cath and Colin were over the moon to be expecting a daughter. But a scan revealed there were problems. Helaina was diagnosed with Costello Syndrome. Her mum shares their story of 24/7 care.
Noah and Gracie
Noah and his little sister Gracie have both been diagnosed with Vanishing White Matter Disease, a very rare life-limiting condition. Their story describes how, although their life is not how they ever expected, the family feel truly blessed with Noah and Gracie in their lives.
Jacob’s family share their story and their appreciation of the help and support the whole family received from East Anglia Children’s Hospice at the end of his short live.
Twenty year old Lucy has Ehlers-Danlos Syndrome. She spoke at the Together for Short Lives parliamentary reception at Westminster where we urged MPs to adopt eight priorities for their parties’ General Election manifestos that, if implemented, would transform children’s palliative care in the UK.
After having two healthy children, Caroline and David were thrilled to welcome a new addition to their family. But straight away Caroline knew there was something wrong with her new son, Charlie. This is their story.
Since visiting Butterwick House Children’s Hospice Paige has never been happier and her mum is very thankful for the respite the hospice provides.
Harvey lived for just four years, but his parents were struck by the kindness and wonderful care they received towards the end of his life, creating positive memories that will live forever.
The Lloyd Family
Dan and Sam are 17 year old identical twins and their brother Tom is 14. When the twins were five years old they were diagnosed with Duchenne Muscular Dystrophy, a genetic disorder which affects boys.