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.

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Cameron is clapping her hands. Cameron is clapping her hands.

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.

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Matilda is laying on the flooring, enjoying sensory play. Matilda is laying on the flooring, enjoying sensory play.

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.

 

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Albert, with his Mum, Dad and brother, Wilfred. Albert, with his Mum, Dad and brother, Wilfred.

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.

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Father and son sitting on a red sofa. Father and son sitting on a red sofa.

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.

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Mohammed Yahya is sleeping, tucked in to his baby blue blankets. Mohammed Yahya is sleeping, tucked in to his baby blue blankets.

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.

Call us on 01795 845280

Email us Explore the family area