Family stories

Here his family share their story on coming to terms with Jude’s condition and how support from Alexander Devine Children’s Hospice Service is helping them cope with everyday life.

Shailza, the boys mother, shares some insight into life with her boys and the invaluable support she gets from Alexander Devine Children’s Hospice Service.

Anna’s mum, Kay speaks of the vital support the Alexander Care Team gave to her and her family in helping to cope with the impact of Anna’s condition and loss of her beautiful daughter.

Kia’s mum, Rachel, explains how invaluable Alexander Devine Children’s Hospice Service has been in caring for Kia and supporting the family especially through the current times.

Shortly after Barnaby was born in January 2008, Barnaby’s parents were given the devastating news that the healthy baby they expected had a severe and rare brain disorder called Lissencephaly. This is his story.

Aayushi has a progressive neurological disorder. Her condition sadly worsened soon after lockdown and her parents were worried that she may not make it to her 18^th birthday in May.

Jessica’s parents were told that she might not live past her toddler years, so have devoted themselves to providing her with the highest quality of life and giving Jessica the chance to live her life to the full.

Four year old Harry is a happy little boy who loves to read books, zoom around in his wizzybug car and play with his sisters. But his mum Jenny shares how his life is very different to other children his age. 

Like most boys his age, Marcus loves playing computer games, playing in the park or with his beloved cat Pebbles. But Marcus’s life is sadly anything but ordinary. He was diagnosed late with Duchenne Muscular Dystrophy, a rare progressive muscle wasting disease.

Five year old Aidan was born with a rare condition called cystic hygroma. His condition requires daily medical management and affects his breathing, eating and speech.