We are Lisa and Andy, parents of four beautiful children – Robbie, Georgie, Annabelle and Aiden. We live just outside Ringwood.

Annabelle started to lose her sight from the age of 7, and by the age of 10 she was completely blind. We were bounced from one hospital to another looking for explanations for this – lots of tests but no answers. This was until August 2016, when we received a diagnosis of CLN3 Juvenile Battens Disease. 

Juvenile Battens Disease is one form of rare inherited disorders affecting the nervous system. Beginning in childhood, it causes rapid vision loss, seizures, thinking difficulties, loss of speech, loss of movement and premature death. There are currently no cures or effective treatments for CLN3.

Annabelle, who attends Ringwood School, experiences seizures, uses a wheelchair when her mobility is difficult and the dementia symptoms affect her daily life. We probably have 5-10 more years with her at the most.

In January 2017 we received the news that Robbie had been diagnosed with CLN3 also. He attends St Ives Primary & Nursery School. His eyesight has deteriorated, he experiences seizures and he is starting to have memory and learning challenges. He’s the most beautiful little boy, gives the best hugs and has the biggest heart of any person we know – he simply doesn’t deserve what Battens Disease will do to him.

Annabelle & Robbie

Annabelle is aware of her prognosis and despite the daily challenges she faces, she lives her life to the full. Annabelle loves listening to music and her favourite band is The Vamps. James McVey, a member of the band visited her at the hospice, where they sang together and chatted.

Annabelle also loves beading and making jewellery, she has now started her own little business on Facebook selling her items. She is still in mainstream school and she is making plans for her future, her education is important to her and she wants to receive her GCSE’s.

Cheeky Robbie knows that he is the same as his big sister Annabelle but not aware of the condition. Robbie started to learn braille alongside his phonics in his first year of school, losing his eyesight had delayed his ability to read, but now he can read and in braille. He continues to play football and enjoys riding his bike around the garden. He has a circle of friends who adapt their playground games so Robbie can join in. He has recently started drumming lessons with the support of the Amber Trust, he has a natural rhythm and is doing well. We used the charity ‘Make A Wish’ to grant Robbie’s wish, his wish was to meet Father Christmas in his house: it was magical.

We started a charity called Batten Fighters Forever, named by Annabelle because it can also be called BFF, and those who support us will become our BFF’s. The charity is there to raise awareness of Batten Disease but to also raise funds to support families that have Batten Disease. This gives us something to focus on and we feel good helping other families who are facing the same challenges.

Our family quest is to give them the best possible life, to make the most of every day and to make amazing memories.