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.
When William was born his mum and dad were told that he was unlikely to live for more than three months. As he had such a short life expectancy they were advised to take him home and spend some quality time with him.
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.
Kaychanel and her family access care and support from East Anglia’s Children’s Hospices (EACH). Kaychanel has a condition called Vacterl Sequence and also has a tracheostomy.
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.