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Ireland's longest-surviving person with EB receives 2,000 messages ahead of 41st birthday

Emma Fogarty, from Abbeyleix in Co Laois, celebrates her 41st birthday on Wednesday
Emma Fogarty, from Abbeyleix in Co Laois, celebrates her 41st birthday on Wednesday

Ireland's longest-surviving person battling the most severe type of the skin condition epidermolysis bullosa, also known as Butterfly Skin, has received 2,000 birthday messages ahead of her birthday this week.

Emma Fogarty, from Abbeyleix in Co Laois, celebrates her 41st birthday on Wednesday, but said she is also celebrating beating the current life expectancy for recessive dystrophic EB, which is 30 to 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."

Emma Fogarty taking part in the Irish Life Dublin Marathon alongside her close friend, actor Colin Farrell

Last October, Ms Fogarty marked her 40th birthday by taking part in the Irish Life Dublin Marathon alongside her close friend, actor 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 people living in Ireland with the rare skin condition and ultimately brought in almost €1 million.

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.