Why? I hear you ask. My children have to face their fears everyday because they have no choice. I have a choice and I have decided to face my fear. My fear of heights, and speed, VERY HIGH HEIGHTS!!!!
This jump is for Annabelle, Robbie and all the Batten families.
Myself and Andy, are 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 Batten Disease. Juvenile Batten 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 effect 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 started to deteriorate, 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 Batten Disease will do to him. We now face the reality that two of our beautiful children will die in the next 10-15 years. Our family quest is to give them the best possible life, to focus on fund raising and support of research in medicines that can help them and other children facing this disease.
Batten Fighters Forever (BFF) is focussed on raising awareness of Batten Disease and the support needs of children and families with
Batten Disease. BFF will provide grants to directly assist children and
families as well as other charities and organisations providing support.