In February of this year our son George was diagnosed with a genetic neurological condition called Batten’s Disease. The condition is rare, with George only the second child currently to have his particular strain of the disease (CLN8). As the condition is degenerative, over time George will lose his basic everyday functions, including walking to school, talking with Grandma, seeing his favourite football team win the league and eating Sunday lunch. There is currently no treatment for the condition. Therefore our handsome, darling boy will heartbreakingly lose his battle against it before he is old enough to fully experience life and all its possibilities. In the mean time however, everyone in his life is making every opportunity and experience the best it possibly can be for him so that he doesn't miss out at all, his ‘bucket and spade list’ is growing by the day!
The national charity, the Battens Disease Family Association (BDFA), has given us incredible support over the past few months and have been an invaluable resource for us as we adjust to a new normal. They also actively increase awareness of the disease and fund future research to identify potential therapies until a cure is found.
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