Colin Farrell is to run the Dublin Marathon with a friend who has epidermolysis bullosa (EB) or butterfly skin. 

EB is a rare genetic condition that means a person has extremely fragile skin - like a butterfly’s wing. 

Farrell’s friend, Emma Fogarty, was born with the condition 40 years ago last month and doctors did not expect her to live. 

“When I was born, I was born with no skin on my left foot and right arm,” she told The Hard Shoulder. 

“The doctors told my parents I wouldn’t last a week and it would be better off if I didn’t because life would be so hard and I would have no quality of life.” 

Ms Fogarty said the first 40 years of her life “have not been easy” with many ups and downs. 

In her 20s, she was diagnosed with and survived cancer in her 20sd.

Then in her 30s, she got cancer again and had her leg amputated. 

“It’s been a hard one but I also like to say, ‘I’ve survived it but I’ve also lived it,’” Ms Fogarty said. 

“I’ve enjoyed things, I’ve enjoyed life and living.” 

Emma Fogarty, Ireland’s longest living person with the most severe form of EB, celebrating her 40th birthday at Killashee Hotel & Spa. Photo: Gareth Chaney

As she approached her 40th birthday, Ms Fogarty decided she wanted to mark it by doing something special. 

She and Farrell have been friends since 2010 and she asked him if he would consider doing a marathon with her. 

“I approached Colin last August and I pitched it to him and… he was like, ‘Well, I don’t know about filming’ - because he’s very busy at the moment,” she said. 

“He said he didn’t know and he would have to figure it out. 

“The more he thought about it, the more he loved the idea and the fact that we would finish it together and cross that finish line together. 

“He liked the idea because we have known each other 14 years and we have become very close.” 

Farrell will run most of the marathon by himself and Ms Fogarty will join him for the final 4 km of the race.  

“I suppose the 4km represents every decade of my life that I’ve survived EB,” she said. 

“So, it’s kind of meaningful in a way and I’m very grateful that he’s decided to take me along and do this with me.” 

The pair hope to raise €400,000 for Debra Ireland, a charity which provides support for those with EB. 

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Main image: Emma Fogarty and Colin Farrell pictured at the Irish premiere of The Banshees of Inisherin. Picture: Andres Poveda.