Emma Fogarty, ambassador for Debra Ireland
A beautiful, bubbly and heroic Laois woman who has combated extreme pain her whole life that has now left her unable to walk, has set herself a challenge to mark her birthday, and asks the public for support.
Emma Fogarty from Ballyroan has Epidermolysis Bullosa (EB) and is the 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," she explains.
"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.
Emma reveals her latest setback from her illness.
"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," she says.
Plucky Emma ends her statement with a phrase from Beyoncé “I’ma keep running cuz a winner don’t quit on themselves".
"Any support you can give would be very much appreciated by me & DEBRA Ireland," she said.
Emma did her first 6km on Tuesday, June 2.
She gave an update that evening.
"Today was the first day of our challenge. We somehow managed to walk 6km!!! we are exhausted and I’m in extreme pain. But it’ll be worth every step of the way if we can raise awareness and some much needed funding.
I know people are struggling in these difficult times but trust me, every little helps ❤️.
"Taking it easy now this evening after starting my ultimate challenge. Today we did 6km out of our 36km for Debra Ireland. It was hard & tonight I’m in a lot of pain I’ve had to take extra medication because of how sore I am.
I won’t be doing any walk tomorrow as I have my 4 hour bandage change in the morning. It will be a very difficult change, it’s never easy no matter how much medication I take. Unfortunately I won’t be able to do any walk tomorrow because of the amount of pain I’ll be in. But, don’t you worry!! I’ll be back in my chair on Thursday ready and rearing to go on another nice walk. If anyone wants to join me ‘virtually’ that is, make sure to take a photo/video, post it to your page, tag me and most importantly use #emmas36challenge!!!!
The support I’ve got so far has blow me away. People are so generous & kind especially in these difficult times," she said.
Emma's fundraiser has already raised over €16,000.