My name is Emma. I have EB, and I am the Patient Ambassador for DEBRA Ireland.  EB means my skin is as fragile as the wings of a butterfly. I have wounds 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 form of treatment is constant, painful bandaging of the skin.

I turn 36 on 25^th June 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 ever taken on before. With the help of the amazing Georgina, I am going to walk 36kms 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 a step again. It hasn’t been an easy start to 2020.

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

And why am I doing it? 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 charity 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, funding, resources and they deserve all the help we can give them.

I guarantee you I will finish this challenge with more wounds 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’m a keep running cuz a winner don’t quit on themselves “ (Beyoncé).

Carpe Diem (seize the day)  – Bobby’s favourite phrase 🦋

Thank you for reading my story – any support would be very much appreciated by me and DEBRA Ireland.