However, equally important is supporting families who have to deal with this tragedy. The illness is particularly brutal because symptoms do not begin to show for several years. Emma was 4 when she started demonstrating them – but the disease is so little-known that doctors initially thought it was epilepsy. It was almost two years before they realised what it was – and when they did correctly diagnose it after this agonising wait, there was no sense of relief.
I was in Japan at the time of Emma’s death, and I suppose I still feel a certain amount of guilt for being unable to be with my family when she passed on. I have as yet been unable to comprehend the reality that she is gone.
Hopefully the money I raise can be used to help other families in a similar situation, and help the children with this terrible disease live somewhat happier lives. I am still amazed by how well my Aunt and Uncle dealt with the situation – but I know it would have been exponentially harder if it wasn’t for the BDFA.
The BDFA (Battens Disease Family Association) devotes its time to this under-recognised ailment. They look after families who are affected by The Disease, facilitate research into a possible cure, and aim to raise awareness amongst the public, as well as with medical professionals. Most importantly they provide a support network for people who have to deal with the disease, and the devastating effect it has on their life.
I would also like to mention The Children’s Trust, who helped give Emma a beautiful place to live, with staff who understood her situation and could care for her well. However, the BDFA is in more dire need of sponsorship.
They are hugely under-funded and receive no assistance from statutory services. They depend 100% on voluntary donations from people like us.
This race is partly for me – but it’s also for Emma, her parents Stephen and Jane, and her little sister Joy – along with all the other families that have to cope with such a loss.
This is what I can do for them. Race fees I have covered myself. Every single penny that I raise in sponsors will go to the BDFA.
Emma was one of the happiest kids I've ever known, and I hope that someday people who are dealt the unfortunate hand she was will be given a little more time to share their lives with the rest of us.