Our daughter, Isla, was born on 2nd July 2008 without any Collagen VII, the protein that anchors the layers of skin together.  She is classed as having the most severe form of a condition called Recessive Dystrophic Epidermolysis Bullosa (EB), a devastating blistering skin disorder that is life shortening and limiting, and causes disability and severe pain.

Like many other children, Isla likes to play and have fun, however, she blisters at the slightest knock and her fragile skin comes away very easily.  We even have to be careful when hugging Isla as even this could hurt her.  Furthermore, she also gets blisters in her mouth and throat which makes eating and drinking very painful.

Isla’s blisters need to be constantly lanced and treated to minimise infection, which is an extremely lengthy and painful process.  We bath and change her bandages twice a week, but this is extremely distressing for her.  The right balance of pain relief is vital and includes morphine and a powerful sedative which induces amnesia.  This helps Isla not to associate pain with mummy and daddy.

At nearly 18 months old, Isla’s feet have never healed and remain constantly bandaged.  She might never be able to walk because of the pain.

Without DebRA’s support, Isla could not live her life to the full.  The charity receives no government funding and relies entirely on voluntary donations to carry out its vital work, improving lives and giving hope to families, like ours, that are devastatingly affected by EB.

DebRA also commissions world-leading research into the condition with the aim of finding effective treatment and, ultimately, a cure for EB.  We hope that this will be in Isla’s lifetime.

I thought it would be a great opportunity to run the Virgin London Marathon (25th April 2010) and Edinburgh Marathon (23rd May 2010), in support of everything DebRA does for Isla, so please give generously. I thank you for your invaluable support and kindness.