Batten Disease sponsored walk 10th May, Vale of the White Horse Oxon 

Our son Ben, aged 10, has late Infantile Batten Disease. 

Ben was born seemingly normal and then developed epilepsy, aged 3, and plateaued in his development. Between 4-5, he lost his ability to walk and talk and then we had the diagnosis and told there was no cure. This is when our candle of hope for him to recover was blown out and our world torn apart.

Since the diagnosis over the last 5 years, he has lost his ability to see, eat, move and his mind. He only has a short time left with us and each month is precious. Batten Disease is a cruel disease..............

We made contact with the Batten Disease Family Association when Ben was diagnosed. The BDFA is the only dedicated UK Batten Disease charity supporting affected families as well as education professionals and facilitating research into the disease. For us, it made the difference betweem coping and managing as a family rather than sinking into depression. We have met and talked with many families and professionals, leaving us feeling less isolated and more informed and being able to enjoy what we have.

To continue the excellent work the BDFA does and help it expand, it needs help, particulalry money. We want to make that happen and although we know it will be too late for Ben to benefit, we want to ensure that affected children and families in the future receive better support and a much better chance for a cure or treatment for a better quality of life to be found.

Therefore Julie and Anna will be joining 200 others in the annual Batten Disease sponsored walk this year on May 10th, attempting 13 miles across the Vale of the White Horse, near Oxford. Ben and James will be there to cheer us along.

Please help by sponsoring us...every penny does count!

Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: Batten Disease Family Association will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you.

If you want to join next years walk or want to give or help further, please contact us direct or look at the website www.bdfa-uk.org.uk

Many thanks for your support.

James Julie Ben and Anna