The Race Against Time...

 

In May 2012 I recall a story in the Sunday Times Magazine about a brave little girl with the most appalling skin condition (Recessive Dystrophic Epidermolysis Bullosa) a genetic disease causing irreversible damage to the skin. I read the article with interest expecting a ‘happy ever after’ ending. Sadly not. The brave heroine of this story is Sohana Collins, now 11 years old and still suffering from this painful disease. Lovingly bandaged every morning and evening by her mother; the sores on her body are akin to second degree burns and there is not a day that passes without her enduring excruciating pain both externally but internally too. This vicious disease is still incurable and continues to afflict 8,000 children in this country.

 

There are several different strains of Epidermolysis Bullosa, including Simplex, Junctional, Dystrophic and Recessive Dystrophic, which is the one that Sohana has. One of the reasons this charity is so compelling is that it affects children from birth and the real tragedy is that their life expectancy is tragically young, because they are more than likely to contract a fatal, malignant form of skin cancer. This is quite genuinely a race against time to find a cure with some much needed research – so what better than to get running? 

 

The Sohana Research Foundation (SRF) operates under the umbrella of DEBRA, the only UK-based EB charity. Slowly but surely there are some glimmers of hope for a potential breakthrough; Fergus Walsh recently reported for the BBC on Sohana and her involvement in promising bone marrow stem cell research currently being undertaken at Great Ormond Street Hospital. However, this is just the beginning and there is so much more to achieve before a solution is found: a solution that would ultimately benefit other victims too - of burns, acid attacks and many other kinds of skin afflictions. 

 

Sohana and her mother recently also appeared on ITV's This Morning, together with charity patron Damian Lewis. Please also take a moment to click on the last thumbnail in the Gallery below to watch Sohana's Dream. 

 

Thank you for taking the time to read this far and for giving so generously. This is a big personal challenge and I hope to raise as much as possible for the SRF and for all the other children in the UK who suffer with RDEB. I am not aiming for a fancy finish time, but would simply like to raise awareness and more importantly raise some much needed funding for this truly worthwhile cause.