Firstly thank you for taking the time to visit my JustGiving page.

This is the first time I have ever done anything like this and I am a little nervous about it. However the reason I am doing this is because both of my children (Scarlett 8, Fletcher 3) and my husband Dan all suffer from EB.

Epidermolysis bullosa (EB) is a group of inherited connective tissue diseases that cause blisters in the skin. Its severity ranges from mild to fatal.
The condition was brought to public attention in 2004 in the UK through the Channel 4 documentary The Boy Whose Skin Fell Off, chronicling the life and death of Jonny Kennedy.

There is currently no known cure for EB. The charity DEBRA,  focuses on funding research to change this, while also supporting people living with EB to enhance their quality of life through improved healthcare, access to information and respite care.

When I was pregnant with both children I knew there was a 50/50 chance that each child could inherit the condition, and unfortunately both children did. Luckily for us both children have it very mild compared to others. Some children cant even be held or cuddled by their parents as they could loose and shred skin. They are know as butterfly children because they are so fragile like a butterfly's wings.

The most annoying thing I find is that even a GPs visit, joining school or nursery, as soon as you are asked of medical history and you say they have EB no one has heard of it. They say "oh is it like eczema"? If only!

My daughter is now conscious of her scars and toenails (as they can loose them or they are really thick) she doesn't want to wear sandals in the summer and cry's saying she wishes she has skin like mine. Its heart breaking. I tell her she is extra special it would be boring if we was all the same :-)

I didn't enter the ballot for the marathon as I didn't want to run just for myself. I wanted to run for a reason, so I contacted Debra before the ballot opened and applied to run for them. I want to raise awareness of the condition and raise money for them to find a cure or find better ways of making this condition easier to live with.

I wont lie I am not looking forward to the training I am just a mum of 2 who hasn't run since before having children! however in my head, I will be running this for both my children, my husband and all the other EB sufferers out there.... I will do it!

Thank you for visiting my page #FightEB!