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 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.
Harry was diagnosed with cancer when he was five and a half years old. Within a week he was given chemotherapy and started 12 months of treatment including radiotherapy and a nine hour operation. Harry has now been in remission for over two years but has been left with a number of health issues. Despite what he has been through Harry continues to smile and enjoy life.
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.
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.