DEBRA is the national charity working on behalf of people in the UK with the genetic skin blistering condition Epidermolysis Bullosa (EB).
There is currently no known cure for this condition as so funding is vital in order to support ongoing reasearch and the other great work that Debra carry's out.
After a heart felt presentation at our recent divisional day, PULSE Community Healthcare voted DEBRA as their charity of choice and our aim is to raise as much money and awareness of EB.
Here is Mason's story:
As Mason smiles at you from his photo the only hint that something is wrong are the sores on his face and bandages on his arms and body. But Mason has a serious, painful and life-threatening condition: Recessive Dystrophic Epidermolysis Bullosa (RDEB). Mason won’t get better and he can’t currently be cured.
MasonMason is five years old and is a playful, happy child with beautiful bright blue eyes, but his skin and internal body linings blister from the slightest knock or rub, causing painful, open wounds. When he was born, the skin was missing from his right foot and leg and the top of his left foot. The hospital emailed photos of Mason’s body to Jackie Denyer, a specialist EB nurse at Great Ormond Street Hospital, and a biopsy confirmed he had RDEB.
This was a very difficult time for his parents, Kerry and Rod, as the results took over two weeks and they couldn’t touch or cuddle Mason in the mean-time for fear of making him worse. Kerry tells us: “After carrying a baby for nine months, it’s heart-breaking not to be able to hold your baby in your arms.”
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 has to be fed through a Gastrostomy button in his stomach. If Mason tried to eat or drink anything in the normal way it would go into his windpipe and down to his lungs.
Mason has to cope with sores and blisters that constantly form all over his skin, his body is bandaged and he lives a routine of lancing blisters, bandaging, coping with the pain and making regular trips to hospital. His iPad helps to distract him from the pain and discomfort as his dressings are removed each evening. Sometimes only a soak in a soothing bath will remove the encrusted bandages. Mason’s dedicated EB nurse visits him at home every fortnight to check his wounds and well-being.
Mason's leg and footYour child starting school is a big event in any parent’s life but it was a particularly difficult time for Kerry as it was the first time Mason had been out of her sight apart from with a one-to-one dedicated carer, or family member since he’d been born. Kerry was worried sick about how the other children would react and treat Mason and that she wouldn't be there if he got hurt physically or emotionally. To ease the transition Kerry talked to the staff and children at the school to help them understand how painful EB is and why the other children had to be careful not to knock Mason.
Despite the severity of Mason’s condition he is a real character, always smiling and active. Kerry and Rod focus on making the best of their time with Mason: “EB children are very special and precious. They bring you so many tears but yet so much joy and pleasure. When you see your child suffering, you treasure every day, every smile, word and moment, as life with an EB child can change so quickly. It’s Mason’s smile that has helped me through the bad times,” says Kerry.
So On Saturday 30th May there will be 5 Pulse members (Sylvia, Sinead, Linda, Jennifer and Jac) are completing a 22mile cycle to help raise funds for children like little Mason White
Whilst the training is still in progress we are all fully equipped and waiting to go, all we need now is for you wonderful, generous people to sponsor us!
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raised of £500 target
by 23 supporters
PCH Scotland's 22 mile Cycle
Fundraising for DEBRA
raised of £500 target
by 23 supporters
We provide care and support to individuals and families affected by EB
Charity Registration No. 1084958