Story
Thanks for taking the time to visit my JustGiving page.
Some of you will know that in 2013 we were told that our two kids, Ellie Mae & Caleb had a life-limiting genetic condition which will cause their health to deteriorate rapidly and will mean they will be unlikely to survive into their teens. We lost Ellie Mae this year aged 6.
The condition is so rare that only about 30 kids in the UK have their variant. This means there is little research of the condition, no treatment and no cure.
In coming to terms with this situation we have been supported by the BDFA. They have the following aim:
Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cureI want to help them help others facing this situation but to do that we need your support. Rod and I will be completing a ride on a Tandem bicycle next July from the town of Roros in Norway, where the disease was first recorded, to the Arctic Circle Centre, a distance of 500 miles.
Please help us to help others facing this disease.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.