In June 2019 the angels at DEBRA Ireland reached out to me with information about EB and their upcoming Arctic Adventure. After seeing the trip video from last year I immediately signed up. I urge you, before reading any further, or even donating that you take a few minutes to watch to see what this trip entails and why.

https://www.youtube.com/watch?v=i0AnSVhxHVE

I recently met with their patient ambassador (featured in this video), Emma Fogarty who suffers with Epidermolysis Bullosa, more commonly known as EB, a severe rare genetic skin condition. This condition causes endless blistering; even gentle skin contact causes devastating wounds. Emma endures hours of excruciating bandaging every couple of days, and when the dressings stick, her skin often comes away too. In severe cases, the internal linings of the body, teeth, nails and eyes are all affected, and the fingers and toes can fuse to give a mitten-like appearance. There is no cure and patients with EB have a high risk of developing skin cancer. 

Emma, the most Extraordinary Butterfly I’ve ever met, was told she would die after a week of being born...now in her 30’s she has the most empowering and awe inspiring story. I'm doing this for Emma, and for the children and parents suffering living with this heartbreaking condition.

I have also spent time with the Claudia Scanlon who is only 15 and also has EB. Although she suffers immensely and has bad days, her spirit is so strong - all I could see was her beautiful soul and courageous energy. I was welcomed into her home with open arms and met her incredibly courageous family who would put anyone moaning and stressing over small problems to shame. This trip, and all of my fundraising efforts are for Emma, Claudia and anyone else battling this horrific condition.