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.