Once again I will be cycling to Paris for the London to Paris Cycle ride in June for the 6th time. Every year I have done this I have raised funds for Chase Shooting Star Childrens Hospice. This year Im not asking people to sponsor me however I am doing a charity training ride in MAY on the Olympic Road course for DEBRA who are one of the chosen charity for London to Paris 2012.

Young Isla has featured in DEBRA fundraising case studies since she was a baby. The photo of her at 9 months old with a raw and painful blistered cheek graphically shows how cruel Recessive Dystrophic EB is and the suffering it causes. Isla is now two and a half but her EB is no less an adversary. Rachael, Isla’s mum tells us: ‘Most of the skin on Isla’s body is affected by her EB and has blistered at some time. She has a small area of skin across her back which has remained intact but that’s about all. It’s difficult for Isla to resist scratching as her skin itches all the time, but of course this just makes thing worse. ‘Now Isla’s walking, she’d obviously love to run around with her friends. She does her best and hobbles along, she puts up with the pain and the fact that it means that her feet and legs will blister. Her hands are quite bad at the moment too which is a big restriction. Having said that, she still manages to have a dance to music and loves to sing and clap along. ‘We are having a bit of trouble getting Isla to  eat enough. She has lost interest and really only enjoys soft food or liquids. We were in a restaurant the other day and all Isla wanted was a bowl of gravy! I guess food is just too much effort for her and she can’t enjoy it.’ Isla’s reluctance to eat may be exacerbated by problems swallowing. Her throat was closing up because the internal linings of her throat had repeatedly blistered and healed. She had an operation to stretch her throat and swallowing is a bit easier now but she will probably have to endure this procedure a number of times as she grows up. Picking Isla up and giving her a cuddle is difficult too, Rachael explains: ‘You can’t pick up a child who has EB by gripping their body or by lifting them under their arms - it rips their skin.’ Isla’s parents are active supporters of DEBRA and the charity’s nursing services continue to be a lifeline for the family. Rachael and Isla’s dad Andy have raised thousands of pounds to help fund the charity’s work. Rachael says: ‘We want to help DEBRA support other families and to ensure research continues into a cure for EB. We don’t know what the future holds but there is always hope and we will continue to fundraise for DEBRA and keep positive for Isla and others like her living with EB.’