Sohana is a happy, positive 10 year old, despite having a very severe genetic skin condition called Recessive Dystrophic Epidermolysis Bullosa (RDEB). She is missing a vital protein cement (collagen 7) in her skin, making her incredibly fragile. This leads to skin loss or blistering at the slightest knock or rub. The condition is incredibly cruel and Sohana's type is progressive, life-threatening and very painful. Both external and internal skin are affected, so eating is always painful and if she suffers an abrasion to surface of her eyes, she is rendered temporarily blind. She lives an exhaustive routine of having blisters lanced, being covered in bandages, hospital visits and constant pain.

She is bright, bubbly and has a smile that can light up any room. She loves reading,drama and music and despite increasingly contracted fingers she plays the piano and recorder.  Her dream (at the moment) is to be an authoress.

Sharmila, her mother writes "If you met Sohana, she would bounce up to you with a huge smile. You would hear about her plans for the future, hear her sing her favourite songs, describe her favourite book. She has a zest for life and a fierce determination to live life to the full, to find humour in its misfortunes and to wear optimism proudly on her chest. Behind her immensely brave happy smile however, lies a deep yearning to have even one day, one minute, one second, without pain".

I met Sharmila through a mutual friend and am so incredibly amazed by what she and Sohana are achieving.  If I can do anything that will help them reach their goal I would feel incredibly proud.

I turned 40 in January and decided if I didn’t do a marathon now I never would and if I am going to run 26.2 miles (say it quickly maybe it won’t seem quite so long?!) I can’t think of a better reason to use the opportunity than to raise money for this research project that will make a difference to Sohana and children like her who are alive today.