Debra is the charity founded to help people with the disease called Epidermolysis Bullosa - but better known as EB. It is the disease James Dunn suffered with and died from in April this year. Nurses at the world renown Great Ormond Street Hospital in London are on record as saying that EB is the worst condition a person can be born with. Put simply, EB, in its various forms is when someone’s skin does not function as it should. It tears and rips at the slightest touch and as skin is the largest organ and extends throughout our bodies inside and out, it does not take much to imagine how debilitating it is and the pain that patients continually endure. There is no cure only salving the pain of this life limiting and in some cases, fatal condition.
The Brothers Trust is therefore proud to be able to continue to support Debra here in the UK with a further grant of £40,000 to completely fund a Community Support Manager, responsible for 400 individuals and their families affected by EB in the south of England. To provide them with financial help, emotional needs, housing complexities, accessing help and education support and planning. Living ourselves in this region, we will come to know this manager and will be able to feed back and demonstrate tangible examples of how your funds are reaching people with EB.
Having a baby with EB must come as a terrible shock to parents. It is a condition that will affect their child and their own lives forever. Typically, a parent and usually the mum will need to become the full-time carer of the child and with this comes emotional strains as well as financial pressures.
Helping such patients and their families is a blessing, made possible by the generosity of our supporters. On behalf of the people who will benefit from this grant, thank you very much.