I'm running the Virgin London Marathon on 17 April to raise £15,000 for DebRA, the national charity working on behalf of people in the UK with the genetic skin blistering condition Epidermolysis Bullosa (EB). I've never run a Marathon before.

I first found out about EB through Sohana, a good school friend of Anastasia's, who was born with this progressive, debilitating and life-threatening condition. Sohana is 8 years old.

Sohana has Recessive Dystrophic EB, the most severe form. Her skin is incredibly fragile, as she is missing a vital protein cement (Collagen 7) necessary to hold her skin to the rest of her body. This means that any knock or rub can cause agonising blistering, tearing and permanent damage to both outer skin and internal linings such as her mouth, oesophagus and her eyes. As a result, in an attempt to prevent damage, Sohana is almost completely covered by dressings.  She has to endure 2-2.5 hour long, very painful dressing checks, morning and night during which her mother Sharmila, lances blisters and dresses new wounds.

Sohana copes with her condition with a smile, immense courage and a fierce determination to enjoy life to the full. She tries to be and it is her dream to be, as much like her friends as possible.

Currently, there is no cure for RDEB.  However, DebRA is campaigning to raise funds for research with the hope of discovering a cure through stem cell based treatment. When I meet Sohana, my heart reaches out. I hope that you will donate generously to this very worthy cause, which ultimately should help improve the lives of people like Sohana who have to endure constant daily pain and suffering.

Yours gratefully,

Smilynne