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On the 20th July 2016, myself, Rob, James and Beth will be attempting the national three peaks challenge to raise as much money as we can for the Batten's Disease Family Association (BDFA). This involves myself, Rob and James climbing Ben Nevis (Scotland), Scafell Pike (England) and Snowdon (Wales) in 24 hours (sounds exhausting - I know!). Beth will have the crucial job of driving us between the mountains!
As you may or may not know, I lost my brother Charlie to Batten's disease in 2003, when he was eleven years old. Batten's disease is a very complex neurodegenerative disease that affects children and is always fatal. From the age of four, Charlie started losing developmental milestones and his necessary skills for life on a daily basis like vision, mobility, his ability to swallow and suffering seizures that are beyond most people's comprehension.
Back at the time when Charlie was very poorly, there was very little awareness about Batten's disease and as a result, minimal research was going into the disease. Amongst others, my mum and dad helped to create the BDFA, which served as a support network for families treading the same tortuous path and facing up to the brutality of losing a child. The BDFA was a support system to families, but also helped spread awareness about the disease and as the charity has grown over the years, it now funds more and more research into the disease. This is why we need to raise as much money as possible, so more money goes into research and eventually one step closer to a treatment/cure!
If you would like more information about Batten's disease or the BDFA please visit http://www.bdfa-uk.org.uk/
So PLEASE join me and my fabulous team and help us raise as much money as we can, both in Charlie's memory and looking to the future to help as many families as possible having to go through the same heartbreak that we did.
PLEASE GIVE AS MUCH AS YOU CAN.
Thank you so much in advance...
Maisie, Rob, James and Beth
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