Eventually, it was discovered that Cameron was suffering from a unique chromosome deletion; so rare that it’s the only recorded case on the worldwide database for chromosomal abnormalities. The family were devastated. Cameron's grandparents, Denise and David have shared her story.

"Discovering that Matilda had the same condition that had taken Ayla away from us, we were thrown back into the whirlwind of appointments and referrals we thought we had left behind. Eventually, Matilda was also diagnosed with Brugada syndrome, a rare and serious condition that causes severe heart complications." - Lisa, mum to Ayla and Matilda.

“Albert, my beautiful eight-year-old boy, suffers from Batten’s Disease; a terminal, degenerative neurological condition which causes seizures, blindness, and over time takes away a child’s ability to move or speak independently. Tragically, the average life expectancy is nine to 11 years. Albert's mum, Holli, shared their story.

Finley, who has cerebral palsy and cannot speak and is registered blind, uses Demelza’s Kent hospice for short breaks every summer. Read more about Finley's diagnosis and the services he accesses at Demelza.

"We were told about Demelza – and said this was a place that could give Mohammed Yahya the care he needed. We cannot describe the feeling of utter relief, the weight falling away from us." - Jamila and Abdul, Mohammed Yahya's parents.