Sohana is a happy, positive 9 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.
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.
Sohana Research Fund is working to raise funds on behalf of DebRA, the UK registered Charity for Epidermolysis Bulllosa (EB) sufferers, with a focus on research into effective treatments and eventually a cure for this devastating condition.
Recent medical advances has made this a real possibility. Your contribution will help make Sohana's dream a reality.
Thank you
Sharmila and James (Sohana's parents)
