Week 7: I’m running for my girls...and all children with EB
Ger Hyland speaks about life with two daughters who suffer from epidermolysis bullosa
Mark and I met in college and were married 10 years later in 2001.
We had our first baby, Alison, in December 2003 and everything was fine. We took her home from hospital and a few weeks later noticed there was blood in the feet of her babygrow.
We couldn’t understand where it had come from. A few weeks after that I noticed there was skin missing from one of her toes and then a couple of days later I noticed there was skin missing from her other toe.
Alison was diagnosed with recessive dystrophic epidermolysis bullosa (EB) and life changed after that. She has blisters on her elbows, knees, feet, ankles, toes and fingers – if someone bumped off her, for example, by that evening she would have a big blister.
This blister has to be burst, drained and bandaged to prevent infection. Every morning when I wake up I check her skin for any new wounds, checking new blisters, bursting them and bandaging.
And every night it’s the same thing. Alison is 11 now – that means 11 years of bandaging, wound care, bursting blisters, baths in disinfectant, creams (which do very little to help) and constant heartbreaking searches for the right footwear for her as her feet are so badly affected. My other daughter, Erica, is six. She’s in senior infants and also has recessive dystrophic EB.
The EB nurse in Crumlin told us about DEBRA Ireland when we were referred to them when Alison was born. Many parents with older children with EB weren’t as fortunate as us as DEBRA was only set up in 1988 so they had no one except the medical teams to speak to.
Having DEBRA gives you strength – you’re not alone, and I’d like to think I could help other parents with newly diagnosed babies.
DEBRA was a great help when Alison was starting school, telling staff what EB was and sending a nurse out to talk to teachers. They are also involved in research. Currently there is no cure for EB and the only treatment is constant, painful bandage changes to prevent infection. DEBRA is investing in research which is going on in UCD. When people are fundraising for DEBRA, the hope is that they find a cure and that’s what DEBRA is working towards.
I have done the VHI Women’s Mini Marathon since Alison was born. I’ve only missed one year and that is the year I had Erica. It’s a female event. I’m a mom, I have two girls and that’s why it’s so important. It’s all about girl power.
I’m doing it for my girls and all children and adults with EB. The camaraderie is amazing. Groups do it with me for DEBRA and my sisters-in-law have done it with me as well. Sometimes I’ve done it on my own but you’re really doing it with thousands of other women and there’s just an incredible buzz on the day. It’s absolutely brilliant. Alison and Erica come in every year to cheer me on and I know I’m doing it for them.
For more information go to debra-ireland.org