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andrew dawkins

Battle Batten with Freddie & Louie

Running the Robin Hood Half Marathon for Batten Disease Family Association because we need to find a cure for Batten disease

135 %
£67,860
raised of £50,000 target
by 461 supporters
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  • Event: Virgin London Marathon 2014, 13 Apr 2014

Batten Disease Family Association

We fund research and support families to find a cure to Batten disease

Charity Registration No. 1084908

Story

My partner Sarah and I were delighted to find out that we were having identical twins in 2005. When Freddie and Louie were two years old, they were diagnosed with Autism and around the same time, began losing their vision. Soon after, we were told that they have Batten disease. 

Batten disease is a fatal inherited disorder of the nervous system to which there is currently no cure. 

Freddie and Louie have the rare form of Batten disease known as late infantile variant CLN5. The doctors know little about CLN5 but have predicted that Freddie and Louie will die before the age of 14. We were totally devastated by this news and our hearts broke in a million pieces. Our boys will deteriorate from this horrendous disease. 

A rare disease often means no funding from government or pharmaceutical companies because not enough people are affected. The Batten Disease Family Association (BDFA) are allowing the money we raise to be used for research into CLN5. We have already raised £20,000 which is enough to commission the first stage of research but we need to do more. For Freddie and Louie. 

Please help us 'Battle Batten with Freddie & Louie' for our children and other children across the globe. 

View our video on http://battlebatten.com; follow me on Twitter http://twitter.com/andrewddawkins (@andrewddawkins) and please tell your friends to like our Facebook page http://www.facebook.com/battle.batten

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