Information for families who have recently started accessing Demelza services.
Welcome to Demelza
Demelza is here to support you and your family at every step –
with care that doesn’t back down.
Demelza delivers extraordinary care to extraordinary children who are
facing serious or life-limiting conditions, throughout Kent, South East
London and East Sussex.
Guide to services
A guide to all the services that we offer at Demelza including contact information.
Book a tour
If you haven't visited a Demelza site before then you can book a tour to find out more.
Family Stories
Cameron's story
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.
Family Stories
Matilda's 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.
Family Stories
Albert's story
“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.
Family Stories
Finley's 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.
Family Stories
Mohammed Yahya’s story
"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.
Get in touch
We offer advocacy and practical, emotional and social support to parents, carers, siblings and grandparents. The family support helpline is open Monday to Friday, 10am-4pm or you can email us and we'll get back to you as soon as we can.