Shropshire Star

Colin Farrell to run marathon to support friend with rare skin condition

Emma Fogarty is Ireland’s longest-surviving person battling the most severe type of the agonising skin condition epidermolysis bullosa.

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Emma Fogarty and Colin Farrell at the Irish premiere of The Banshees of Inisherin

Actor Colin Farrell has paid a moving tribute to a close friend marking her “miracle” 40th birthday – and revealed he will be running a marathon with her.

Emma Fogarty is Ireland’s longest-surviving person battling the most severe type of the agonising skin condition epidermolysis bullosa (EB).

The Laois woman’s parents were told she would not live a week beyond birth but she reached her milestone birthday last month, surviving cancer twice in the interim.

Farrell, who is to star in next year’s A Big Bold Beautiful Journey opposite Barbie actress Margot Robbie and is also filming Netflix thriller The Ballad Of A Small Player, is embarking on Emma’s Run To 40 by taking part in October’s Irish Life Dublin Marathon.

Ms Fogarty, who celebrated her birthday with a reception at the Killashee Hotel in Kildare on Tuesday, plans to join him in a wheelchair for the final stages.

Emma Fogarty, Ireland’s longest living person with the most severe form of EB, celebrating her 40th birthday
Emma Fogarty, Ireland’s longest living person with the most severe form of EB, celebrates her 40th birthday at the Killashee Hotel in Kildare (Gareth Chaney/Mediaconsult/PA)

The friends hope that, with the public’s help, the challenge will raise 400,000 euro for Debra – the national charity helping 300 people in Ireland who live with EB.

Farrell said: “Emma Fogarty is not only the strongest person I’ve ever met and a true warrior, I’m lucky enough to call her a friend.

“For years now, I’ve been fortunate enough to bear witness not only to her courage and her vulnerability, but her humour, her stubbornness and her great, great heart too.”

The Banshees of Inisherin star added: “The fact that I’m getting to run the Irish Life Dublin Marathon with my friend to celebrate her 40th birthday is something I’m so excited about. She’s already won the whole day!”

Ms Fogarty’s birthday on June 25 was one she was never expected to reach.

She endures a constant battle against the most severe form of the rare, genetic disease (recessive dystrophic EB), with sufferers currently given a life expectancy of around 30-35 years.

Born with no skin on her left foot and right arm, she suffers excruciating blisters on her skin from the slightest touch – the condition is also known as “butterfly skin”.

“The doctors said it would be better for me not to make it, because my life would be so hard,” she said.

“No-one expected me to survive for this long – because people with my type of EB almost never do – but I’ve always been encouraged to be a fighter.

“Reaching 40 shouldn’t be a miracle, but right now it is.

“I’m asking everyone to donate to Debra, which has been like a family to me, so everyone with EB in Ireland can live the longest, fullest life possible.”

Ms Fogarty, from Abbeyleix, has supported Farrell, 48, at several of his Irish film premieres, but her life is lived in the constant shadow of the condition – 80% of her body is covered in layers of bandages, needed to prevent wound infection.

Changing them every second day takes four hours at a time and leaves her screaming in pain.

Funds raised during Emma’s Run To 40 on October 27 will be used to fuel pioneering research which could transform the future for everyone with EB in Ireland.

Supporters can learn more about the initiative at debra.ie/runto40 from Wednesday.

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