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.
14-year-old Zyan has hypomelanosis of Ito syndrome and has been accessing Demelza's services for years. As Zyan gets older, mum Penny and dad Nnamdi feel the pressures on his mental health, sharing: “I’m very grateful that Demelza has always been there to talk about things like this."
"Darcey’s smile and her character help us stay strong – as does the support from our friends and family. But, due to Darcey’s complex medical needs, there is so much they cannot help with. That’s why the support we’ve been receiving from Demelza has been vital." - Zoe, Darcey's mum.
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.
Demelza South East London
Situated in the heart of South East London, our hospice in Eltham has excellent transport links into the Capital and is surrounded by local amenities and beautiful parks.
Demelza East Sussex
Demelza offers a community hospice at home service for children and young people up to the age of 18, providing respite and end of life care in the comfort of a child’s own home across East Sussex.