A teenage girl from Verwood shared the heartbreaking story when she found out that she and her six-year-old brother shared the same life-shortening condition in a touching new film from Julia’s House.
Annabelle Hover, 14, and her mom and dad, Lisa and Andy, shared their story in the Dorset and Wiltshire Children’s Charity Christmas Appeal.
Annabelle suffers from Juvenile Batten’s disease, a devastating illness that has lost her sight, causing seizures and dementia.
She is expected to live into her late teens or early twenties.
Tragically, Annabelle’s younger brother Robbie has now been diagnosed with the same disease and is already registered blind.
The siblings are two of 42 children in the UK known to have this type of juvenile Batten disease.
The Hover family courageously participated in Julia’s House Christmas fundraiser and ask the public to help raise funds for the life-changing care and support the charity provides to families like theirs .
âEach Christmas becomes more precious than the last because we don’t know how many we still have together,â says dad, Andy.
Mom Lisa continues, âI can’t believe what happened to our family – the impact on all of us. We’re on an emotional roller coaster trying to protect Robbie. We don’t want him to see the fear we have, and Annabelle is a daily reminder of what’s to come.
âThe fact that Julia’s House is also taking care of Robbie is a comfort, because when Annabelle leaves he will have that level of understanding and support at a really difficult time. We all will.
One of four children, Annabelle attends a youth club at Julia’s House where she can be like any other teenager, meet friends and listen to music from her favorite band, The Vamps.
The healthcare team also visits Annabelle and Robbie at home to give their parents a precious break and help them make the most of each time they spend together.
Julia’s House receives only 5% of government funding and relies on fundraising, donations and bequests for the vast majority of the money needed to run its vital service and support people like Annabelle and Robbie.
You can view the Christmas appeal on Julia’s House website where you can also donate.