Thanks for taking the time to visit my JustGiving page. 

Hi, I’m Emma, I have EB, (Epidermolysis Bullosa) and I am Patient Ambassador’ for the EB charity DEBRA Ireland.  EB means my skin is as fragile as the wings of a butterfly, and I have wounds on over 80% of my body. I am in constant pain, and on more medication than I care to say. Currently there is no cure and the only treatment is constant painful bandaging of the skin  

I turn 36 on June 25th and to mark the occasion I am going to take on a challenge that is so unprecedented  and as far as I’m aware, nobody has taken on before. With the help of the amazing Georgina I’m going to walk 36km in my wheelchair  

This past year has been my toughest yet. I had life saving surgery that has changed my life forever, and I will never take another step again. It hasn’t been an easy start to 2020! 

Although I can’t walk, this challenge for me will be an endurance test of pain. Can I endure the ramps, the bumps, the potholes and a pebble on the road? Will I be able to get through the 36km with all the pain I have?  I reallly hope so!! 

I can hear you ask, “why is she doing it?” That’s easy, I’m doing it to support DEBRA Ireland. The only charity in Ireland supporting people living with EB. They are an amazing charity. There is no other charity out there that would drop everything to come and see you in a hospital bed while you’re crying. Without them we wouldn’t be able to fight EB. We wouldn’t be able to get nurses, research, resources, funding and they deserve all the help we can give them. 

I can guarantee you I will finish this challenge with more wounds on my body than when I started,  but this challenge is so important to me. I want to show people (and myself) that life is for living and nothing is going to stop me achieving my goal  

 “I’ma keep running cuz a winner don’t quit on themselves “ (Beyoncé).  

Carpè Diem (Seize the Day)  - Bobby’s favourite phrase 🦋

Thank you for reading my story. Any support you can give would be very much appreciated by me & DEBRA Ireland