Hi And thank for looking at my page!

As it says above Donna and i will be running the the great north run, Unfortunately Donna is unable to run, so my other best friend Gemma will be taking her place! 

Well This is all about my little Girl Hollie!, 

She is 6 years old with a head of a 16 year old!(cheeky little madam she is at times!... but wouldn't changer her for the world!)

Although there is one thing i would change if i could and thats her having to live with the very painful condition Epidermolysis Bullosa (EB), 

The only simple way to describe this condition is, its like having no glue to hold your skin on to your body, So any slight friction will cause her to blister, a slight knock or scratch will take the skin straight off. This not only affects the whole of her body, this also effects her mouth, tongue, gums and also down her throat, but not only that, she also blisters her eyes, which she often does and has to sit in a darkened room until, they have healed..

we dont know what the future Holds for Hollie as all this skin trauma, usually turns into skin cancer, and this usually effects them in early adulthood, 

Hollie has to endure a dressing change every 3 days, and bits in between, she is bandaged from head to toe, to cover up the sores and the blisters (which i have to pop and drain on a regular basis), this is a very traumatic time, which upsets both Hollie and me, I also have to strap in between her fingers, to try and prevent the fusing of her hands..

Hollie is one of the most upbeat happy kids i know, I love her and her brother Bobby more than anything in this world and would give anything to see them be able to play fight, swim, ride bikes and go on proper holidays together... 

This is why me and Gemma Are running a painful 13.1 Miles round newcastle on september 19th, so please dig deep and help raise awareness of this awful condition,  every penny raised goes to the charity DebRA, who have a a huge research program into eradicating this condition, They have come a long way in research and lets help them carry on until they find a cure!

£1 will provide 'scratch mitt's' to prevent a baby born with EB from tearing their own skin

£5 will provide a set of easy grip chunky pens to help children hold a pen when their fingers are fussed together from repeated scarring

£10 will buy a tube of 'no sting medical adhesive remover' to help ease the pain of dressings change

£25 could pay for one hour  of research to bring us closer to finding an effective treatment for EB

£100 is the average cost of dressings needed every two days.

Thank you all so much for reading this

Love Leah, Gemma, and also the beautiful Hollie xxx

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