I had never heard of Epidermolysis Bullosa(EB) until my sister aproached me one day to ask if I would be willing to grow my hair, unstyled and undyed, to cut off and donate to be made into a wig.

My sister told me about her friend Clare and her niece and nephew and this awful condition

This is Clares story..

It seems like a very long time ago that I sat down with my Grace and talked about some of the difficulties she experienced not having hair that most other girls her age have. This conversation sparked a thought in my head which has lead me two years down the line sitting here writing this to you.

Grace and Freddie have a rare form of EB. They are amazing kids who everyday have no choice but to deal with the effects of this severe condition. Their younger sister Joan does not have EB, but as with any family which has children with a chronic illness, the whole family experiences the pain on some level.

My main incentive to raise money has always been Grace, but my brother Peter has done so much for DEBRA, from the Great South Run to standing in the ring at Skys fight night and telling his story to thousands of people to raise money for this well deserving charity that supports him and his kids, I continue to feel compelled to support his own effort.

My hair will grow back, but for Grace and Freddie, and all the children and families that DEBRA support it is a never ending endurance test with every day being a challenge that nobody should have to cope with. This is a life limiting condition, and I feel that any money raised to go towards their research is of upmost importance and may give hope for these families and those in the future that are affected by EB.

I will be doing this alongside THREE of my sisters, a friend and a sisters boyfriend, who also felt compelled to help DEBRA.

Thanks for taking the time to visit my JustGiving page.

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.

 

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.

So PLEASE dig deep and donate now.

:) Thank you.