On Sunday October 7th, I will be doing the DEBRA London Bridges sponsored walk with my daughters Cara and Georgia for the Sohana Research Fund.
The Sohana Research Fund was set up by the parents of Sohana Collins and is working to raise funds on behalf of DebRA, the UK registered charity for Epidermolysis Bullosa (EB) sufferers. EB is a currently incurable genetic condition which causes skin to blister and shear at the slightest friction.
We first found out about EB when Cara started school with Sohana’s twin sisters one year ago. Sohana is a happy, positive 10 year old despite suffering from this incredibly cruel condition. Her type of EB is progressive, life threatening and very painful. It causes children to gradually lose the skin over their bodies, leading to intense pain and deformity associated with scarring.
Sohana lives an exhaustive routine of having blisters lanced, being covered in bandages, hospital visits and constant pain. Both external and internal skin are affected, so eating is always painful and if Sohana suffers an abrasion to surface of her eyes, she is rendered temporarily blind. Sohana copes with her condition with immense courage and a fierce determination to enjoy life to the full.
The Sohana Research Fund focuses on funding research into effective treatments and eventually a cure for this devastating condition. Recent medical advances has made this a real possibility. The first Clinical trial funded by the Sohana Research Fund will start at Great Ormond Street Hospital later this year. However, further funds are urgently needed in order to complete the research, which will also have benefits for other conditions such as burns.
Whenever we see Sohana, she is always smiling and busily engaged in one of her many interests. However it is heartbreaking for us to know that she endures such pain and cannot do so many things that our children take for granted. We know that her dream is to eliminate this devastating condition for ever and we want to do all we can to make her dream come true.
Please give as generously as you can – all donations to Debra through this page will be allocated to the Sohana Research Fund (100% of donations to medical research).
For further information about Sohana, RDEB and the research, please visit this new website www.sohanaresearchfund.org.
Sohana was featured in the Sunday Times magazine in May 2012. Here is the article: http://www.debra.org.uk/uploads/resources/Times_Miracle.pdf
And here is a recent interview on ITV’s ‘This Morning’ with Sharmila (Sohana’s mother), Professor McGrath (Guys & St Thomas’s) and Sohana herself - http://www.itv.com/thismorning/life/girl-whose-skin-blisters-at-touch/
Thank you for your support.