Those are the words that Oliver Thomas's grandmother, Ashtead resident Gwen Gale used to describe her grandson. | ||
Siân and Oliver - share a gentle hug Surrey Comet |
Nine year old Oliver lives in Claygate with his two year old sister Siân, mother Sarah and father Mick.
Oliver suffers from a genetic disorder called Epidermolysis Bullosa (EB).
It is a distressing genetic skin condition that causes skin layers and internal body linings to separate and blister.
People with EB have very delicate skin. The slightest knock or rub can leave long lasting damage and increasing disability.
It is something you are born with - it cannot be caught.
Looking after Oliver requires a lot of gentle care and attention. He needs pain-killing morphine to help get through his daily bath. However, with the help of a carer, Oliver attends a mainstream school. Although he is unable to run or walk very well he joins in where he is able. He regularly attends Great Ormond Street hospital for a few days at a time and on these occasions his mother stays with him. Grandmother Gwen helps-out by looking after Siân who, as you can see from the photograph, loves her brother very much. Gwen helps raise funds for DEBRA (Dystrophic Epidermolysis Bullosa Research Association). The organisation was set up to raise funding for medical research, to provide specialist care and welfare and educate the public and healthcare professionals about EB. Most recently she hosted an annual coffee morning and bring and buy at her home in Ashtead. You may have spotted the new Debra charity shop in Leatherhead. The opening of this shop was instigated by Helen Taylorson a friend of Sarah's. They met at NCT (National Childbirth Trust) classes when they were both pregnant. In the ever-difficult task of fund-raising, volunteer help is needed at the new shop. Can you help? Phone 372922. | |
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