Seriously big thanks to all who have supported fundraising efforts this year.

An especially large thank you to the Sixth formers of St Georges School in Harpenden and in particular to Dan Nunn who has enthused his House and  fellow pupils and handed over a thousand pounds to me for DebRA. To raise this amount when they are all busy revising for exams is a wonderful achievement. So very many thanks to Dan and the other students from me and all at DebRA.

The beautiful young lady in the picture is Jadene (and her mum). Jadene is one of the five thousand people in the UK affected by the condition Epidermolysis Bullosa (EB), as is my young friend Kayla. In EB the proteins that bind the skin layers together are weak, leaving the skin as fragile as a butterfly's wing. As a result their skin tears and blisters very easily leaving painful sores and scars.  Under Jadene's fetching pink shell suit she is covered in bandages to try and protect her skin. Changing dressings, lancing blisters and keeping her wounds clean is a long and painful process. Imagine the strain as a parent of having to inflict daily pain on your child in order to try and protect their skin from damage and infection. Many of those affected by the condition end up with open wounds, scars and fingers and toes fused together by scar tissue.

DebRA is the charity that works to support families affected by EB, by improving treatment for those with the condition, and searching for a cure. This means raising awareness so that when a child is born with EB the symptoms are recognised and DebRA's specialist nurses can support the parents as soon as possible. Because EB is often a recessive condition the first time that the parents know that they both carry the gene is at the birth.

DebRA also provides support in managing wounds, dressings and nutrition, (EB affects the internal skin surfaces as well as external so eating and defeacating can be excruciatingly painful, to add to the misery of blisters on your body). Many of the children affected by EB can't eat and have to be fed by a tube into their stomach. It has been described as the worst disease you have never heard of, and I can see why.

DebRA is also funding international research for a cure which is yielding very encouraging results and moving DebRA towards its goal of "a life free of pain". I became aware of DebRA thanks to Nell McAndrew's article about the late Jonny Kennedy ("The Boy whose skin fell Off" was the award winning documentary about JK). Since then the work of DebRA, and the appreciation for that work from those affected by EB and indeed from other charities continues to astound me.

So please try and imagine a life where as a parent you have to spend hours changing dressings on open wounds and lancing blisters on the skin of your child every day causing pain to prevent worse damage. As a child where you day starts with a cocktail of drugs to manage the pain and defend against infection. Growing up as a young adult unable to join in sport and games in a battle to protect your skin from further damage. Then please donate as much as you can whether it be the price of a jar of makeup, or bottle of perfume or after shave, to help skin that is so fragile that it is compared to a butterfly's wing, and help DebRA's work for a life free of pain.

Two pound fifty will pay for a pair of scratch mittens to prevent a new born baby tearing its own skin.

Five pounds will pay for a set of chunky easy grip pens that are easier for a child to hold when their fingers are fused together by scarring.

Ten pounds will pay for a tube of no sting medical adhesive remover to help ease the pain of dressing changes.

Twenty five pounds will pay for an hour of research to bring an effective treatment for EB that bit closer.

So whatever you can give will help in a real way to make a difference to Jadene Kayla and the other butterfly children and adults.

Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: DebRA will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you.


Many thanks for your support and please tell all your friends, DebRA is a special charity as it has a specific achievable goal, a cure for the condition so that children like Jadene, Kayla, Jordan, Holly, Tia, Brida, can live life free of pain with your help,   

Peter Freeman