Challenge Two

Challenge Two

Help fight EB by raising £100,000 #FightEB

A few years prior, I remember seeing a programme on the TV about a girl who had a really bad skin problem. Her skin just seem to come off at the slightest touch. I remember seeing her mum taking off the girl’s bandages and the skin coming away with the bandage. As you can imagine the girl was in agony. I reckon she was only 7 or 8 years old. She was crying out in pain. Her mum applied various creams and redressed the girl in clean bandages. The girl was like any other child of that age. She wanted to play with her mates and do all the things that girls, of this age, do.

I have 2 girls so I know what It is all about. This poor girl would have to go through this process several times a day for the rest of her life and yet she seemed so positive and full of life that it was amazing. It really struck a chord with me. I could not imagine how I would be if one of my girls became very ill and how I would cope.

When I thought about a charity, I remembered this programme I had seen years before. It may have been coincidence or fate perhaps, but on TV, at the time of planning, there was a series of small programmes about people living with disabilities. One of the programmes showed a girl with this terrible skin condition. She was in her 20’s. She was so positive. She knew that her life would be full of hurdles and extreme pain and yet she was more upbeat than most people I know. The condition she had was EB. Epidermolysis Bullosa. The kids affected by this disease are sometimes referred to as Butterfly Children because their skin is as delicate as the wing of a butterfly. It broke my heart to watch and I knew that this was the charity I wanted to support. I went onto the internet and found DEBRA. I went onto the site and read about what they did and about the disease. It was an open and shut case. The charity was sorted.

DEBRA Business Insight PDF November 2020

Research

DEBRA helps provide specialist care for people with EB. They provide specialist nurses, dietitians, physiotherapists and podiatrists. They do all this in close partnership with the NHS.