49,000 children and young people are living in the UK with health conditions that are life-shortening 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-shortening 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.
After failing to reach a number of milestones, Joshua was diagnosed with Duchenne Muscular Dystrophy, a terminal muscle wasting condition. In Joshua's story, his mum Karen explains why Christmas is so important to their family.
8-year old Zoë has osteopathia striata with cranial sclerosis (OS-CS), a rare genetic bone dysplasia which causes motor skills developmental delay. She also uses a tracheostomy to help her breathe. She also has a rare disorder called Moyamoya, which causes chronic headaches and mini-strokes.
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.
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.
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.