Please sponsor me! If you can’t, please share this post and leave a comment – wish me luck!

I am taking on what will be the hardest physical and mental challenge of my life at the end of June – call it a mid-life crisis if you like, I am 50 now! It will be a test of Brains and Brawn (their words, not mine) – to get a feeling of what it will be like see a video from last year’s event. https://www.youtube.com/watch?v=eyArIf02iUc

I am doing this to raise money for the BDFA who support families of children with Battens Disease. A quarter of all of the funds raised from the event will go to the BDFA (all of my money raised will). Annabel has Juvenile Battens Disease (CLN3). She was a completely normal child until primary school. Although we probably didn’t know it, we had the perfect life, the perfect family. I would give away everything I have in a heartbeat to take this disease away from Annabel. Everything has changed for her, for us. She has lost all of her useful sight, she has epilepsy which is becoming more difficult to control, it will get worse. She has childhood dementia, is mentally more like a 7 year old although she is 15. She is still the most beautiful, loving, funny, cheeky girl, we love her with all of our hearts, we want to keep her forever.

It is a genetic neurological condition and she will lose all of her abilities, there is no doubt, there is no cure. For a child who had everything, it will all be taken away. There is nothing that we can do to stop her decline – her brain is shutting down, being poisoned from within by not being able to process waste. She will lose the ability to walk, to talk, to feed herself, to do anything. She will not survive this, life expectancy is anything from 16 to 35, she is not expected to live beyond her mid 20’s. There is a massive cloud over our lives which will never go away.

So what can we do? Live for today. Not give up hope. Make the best memories we can for her, and our family. Raise awareness, raise money to help ours and future diagnosed families. To one day find a cure so no-one else has to go what Annabel is going through, what we are going through, what all the other children with Battens are going through.

Thank you for taking the time to read this. What I am going to put myself through for 3 days/nights is nothing compared to what Annabel is going through now, or will face.

Please donate if you can, even if it’s just £1. Please gift aid. If you can’t afford to sponsor me please leave a comment and share. If you are also doing the UK Challenge – please give me a hand running and cycling up those hills, kayaking across those lakes!

#BattensDisease #CLN3 #BDFA