Ireland’s longest-surviving person battling the most severe type of epidermolysis bullosa (EB) has received over 2,000 birthday messages ahead of her 41st birthday on Wednesday, June 25.
Emma Fogarty, from Abbeyleix, is celebrating beating the current life expectancy for recessive dystrophic EB, which is 30-35 years, by yet another year.
“I fought to go to college, I fought to live independently, I fought to learn to drive, I fought cancer twice, I fought to get to 40 – I’m still fighting,” she said.
A birthday message from a well-wisher, one of over 2,000 to be compiled in a book, said: “You are a powerhouse – an inspiration in how you push through to raise awareness despite a huge cost to your own health.
“I don’t know how you have the strength but wherever you derive it from – I hope it continues to sustain you. Happy birthday.”
Last October, Emma marked her 40th birthday by taking part in the Irish Life Dublin Marathon alongside her close friend Colin Farrell, who ran the entire event and pushed her for the final 4km.
“Some moments stay with you forever. Crossing the finish line at the Irish Life Dublin Marathon is one of them,” she said.
“I feel happy whenever I think about it. It’s a great memory to have.”
The friends originally hoped they would raise €400,000 for Debra, the national charity helping 300 people living in Ireland with the rare skin condition, and ultimately brought in almost €1million.
Funds raised during ‘Emma’s Run to 40’ campaign are being used for pioneering research and vital and bespoke support for everyone with EB in Ireland.
No-one understands the need for this better than Emma.
Eighty-per-cent of her body is covered in layers of bandages, needed to prevent wound infection, and it takes four excruciating hours to change them every second day.
“Pain is just part of life with EB. It’s always there. I’m always in agony.
“And just as I predicted on the Late Late Show, that 4km took a massive toll on me. It took even longer than expected for me to recover,” said Emma.
“Just after Christmas, I got a painful lump and an infection in a wound on my right elbow.
“I had a sinking feeling that I was about to face my third bout with cancer.
“Thankfully, the biopsy was clear, the lump was benign. But it took a lot of medication and a long hospital stay to deal with the infection.
“I’m delighted to be back home now, a bit drained, but so happy to be well.
“Whatever happens in life – whether it be bad news, hospital visits, or needing a new wheelchair – I’ve always felt safe and acknowledged knowing Debra is here.
“Debra only gets a very small amount of government funding. This means 99% of all the money they raise to fund research, support and care comes from amazing people who donate.”
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