A RINGWOOD family devastated by two life-limiting diagnoses for their children have described their heartbreaking experiences and created a charity in their honor.
Sister and brother Annabelle and Robbie Hover have both been diagnosed with Juvenile Batten Disease – a rare genetic disease of the nervous system with a limited life expectancy.
Annabelle, 16, who lives in Ringwood, was born in 2005 to parents Lisa and Andy. “He was a healthy, happy baby,” Lisa said. “Then, at age seven, she started losing her sight.”
Annabelle was registered blind in 2013 and the family have spent years trying to understand the cause of her vision loss. In 2016, she underwent blood tests to rule out Batten disease.
Lisa said: “We had never heard of it before. After testing my husband googled it and saw the color draining from his face. Looking at the list of symptoms, that was all Annabelle had.
Six weeks later they traveled to London for the results. Lisa recalls, “When we were in the waiting room, I said to Andy ‘if there’s more than one chair, that’s bad news’. There were five chairs.
“It was awful. Getting back on the train, surrounded by everyone living a normal life when your life fell apart.
Juvenile Batten disease is a neurodegenerative disease of the nervous system that inhibits the body’s ability to recycle cells. It starts in the brain and eventually impacts the whole body. There is no remedy.
Devastatingly, Annabelle’s younger brother Robbie was also confirmed to have the condition in 2017.
Lisa said: “She was so upset, of course, but it made her more determined. Robbie was only four years old, so had very little understanding. We told him he was like Annabelle – he was just happy to be like his big sister. He loves her so much.
The family has since set up their own charity, Batten Fighters Forever (BFF), to raise awareness of the condition and campaign for further research.
Robbie and Annabelle were referred to charity Make-A-Wish UK in 2019 when Robbie’s eyesight began to deteriorate. Her wish, to see Santa Claus before losing her sight, was granted that year with the family traveling to Lapland.
Annabelle’s wish for a new bed with massage function was granted by Make-A-Wish in March 2022.
Since November, she has suffered from severe cognitive decline and now shows signs of dementia. Loving mum Lisa added: ‘This bed has helped her so much. It makes her happy – and all I want now is for her to be happy.
Visit make-a-wish.org.uk/south-east and battenfightersforever.com to find out more.