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Late Infantile Battens disease is a degenerative condition which usually starts at around age 3 and sees children very quickly lose their mobility, their speech and their eyesight.  These children rarely survive into their teens.

The condition is so rare that it only affects about 30 children in the UK with only 4-5 new cases diagnosed each year.

Both my children, Ellie Mae & Caleb, have recently been diagnosed with Late Infantile Battens Disease.  In dealing with the news and preparing for the future we've been fortunate in receiving lots of support from family, friends and colleagues but I'm very aware that there are other families struggling in the same situation.  The BDFA have been a great support to us by helping us apply for funding when needed and by talking to our childrens' school and pre-school to help them help the kids.

I would like to raise money to help the BDFA continue to support others in our situation.

Those of you who know me well will appreciate that, whilst I love cycling and cake, I hate running so this is going to be a real challenge for me.

It would be great if you could support and share the page with others to increase awareness of the condition and support for the BDFA. 

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