On 25 June 2011 I will be riding from London to Paris covering over 100miles a day whilst supporting the DEBRA charity who support those affected by Epidermolysis Bullosa (EB). www.debra.org.uk
There is a little boy called Mason White who suffers this serious, painful and life threatening condition, Recessive Dystrophic Epidermolysis Bullosa (RDEB).
RDEB is a genetic condition that causes blistering and shearing of the skin and internal linings from the gentlest friction. The 'hooks' which attach the epidermis (top layer of your skin) to the dermis (the thicker deep layer of your skin) are absent which means the skin layers easily separate and continuously blister.
When Mason was born, the skin was missing from his right foot and leg and the top of his left foot. The severity of Mason's condition means that he has already been critically ill after the lining of his oesophagus came away. He now cannot swallow food, fluid or medication and he has to be fed through a Gastrostomy button in his stomach.
Mason also has to cope with sores and blisters that constantly form on his skin, his body is bandaged and he lives a routine of lancing blisters, bandaging, coping with the pain and making regular trips to the hospital. Despite all of this Mason keeps on smiling.
DEBRA funds 10 specialist EB nurses and 3 Social Care Managers to help children, adults and families affected by this cruel condition.
Over the next three years DEBRA wishes to commit significant funds to further their aim of finding lasting and effective treatments for all types of the condition.
So please dig deep and support DEBRA by not only donating but by helping to create awareness of this cruel, painful and life threatening condition.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
