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Adam Shaw avatar
Adam Shaw

Running for a better life for my girl

Fundraising for DEBRA

80 %
£6,053.00
raised of £7,500 target
by 79 supporters
Donate
  • Team members: Adam Shaw
  • Event: Flora London Marathon 2006, 23 Apr 2006

DEBRA

We provide care and support to individuals and families affected by EB

Charity Registration No. 1084958

Story

Hi,

My name is Hollie Shaw; I am now 2 years old. I have Dystrophic Epidermolysis Bullosa, EB for short. What is EB? Well, my skin doesn’t stick together properly, so if I bang myself or my clothes rub, my skin sometimes comes off. This does hurt but it’s when I get them in my mouth or down my throat that’s when it really hurts. When this happens I struggle to eat or drink until the pain dies down. However, this may only happen once a month as it looks like I have a milder condition of EB.

I have my dressings changed every three days and I need my mum and dad to do this so that I don’t damage myself in the process.

Only time will tell how EB will effect my life and to start to answer the questions of whether I will need a wheelchair, tube in my stomach so I can eat or whether I will end up with skin cancer at a young age.

My mummy and daddy make my life as fun as possible and I will not let this horrible EB stop me from living life to the full. I can now walk and also run when it’s safe to do so. I have to be honest I am a bit of a mover and a flirt on the dance floor but my dad keeps me out of trouble. I love playing in the park and hopefully one day I will be able to play without a care in the world with my friends.

 

Thanks to everyone for sponsoring my daddy in the marathon and I can’t wait to see him cross the finishing line for a big cuddle!

 

Love Hollie x x x

 

Every £5 will fund 15 minutes of research.

£20 will bring hope of effective treatment one hour closer.

£75 will provide an EB Health Care Specialist for a day.

£150 funds a researcher bringing the reality of a cure one day nearer.

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.

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