Actor Colin Farrell will run in the Dublin Marathon in honour of his close friend Emma Fogarty, the longest-surviving person with severe skin condition epidermolysis bullosa (EB).
Emma, from Abbeyleix, Co Laois, lives with 80 per cent of her body covered in bandages to prevent infections, a painful process requiring hours every second day. Emma’s parents were told she would not live beyond a week, but she reached her 40th birthday last month, having survived cancer twice in the interim.
To mark this significant milestone, the Oscar nominee agreed to participate in the marathon in October. Emma will join him for the final four kilometres in her wheelchair.
“He’s going to push me and each kilometre we do together represents a decade of the life I’ve lived and survived with EB,” Emma said.
Iftas: Small Things Like These adaptation beats Kneecap to win best film award
‘It’s your shame’: Woman tells court she came to think being raped by her father was ‘the norm’
Man found guilty of rape and murder of Co Donegal backpacker Danielle McLaughlin in India
‘I had first-years with a WhatsApp group mainly used for porn sharing’: Why parents are delaying access to smartphones for their kids
Farrell described this milestone as a “miracle,” given the extraordinary challenges Emma has overcome.”
“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,” said The Banshees of Inisherin star.
“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.
![Emma Fogarty, Ireland's longest-surviving person battling the most severe type of the agonising skin condition epidermolysis bullosa, celebrates her 40th birthday at Killashee Hotel & Spa. Photograph: Gareth Chaney/PA Wire](https://www.irishtimes.com/resizer/v2/F77JVIWT5ITLNRPWRWVRQVJ3BU.jpg?auth=5655c34052ddddaa2dd11b3d8d864bd878e80a1f98187ecd11928f8c7cf99174&width=800&height=507)
Farrell, set to star in next year’s “A Big Bold Beautiful Journey” alongside Margot Robbie and currently filming Netflix thriller “The Ballad of a Small Player,” will run the Irish Life Dublin Marathon in October as part of ‘Emma’s Run to 40′. Emma, who celebrated her birthday with a reception at Killashee Hotel and Spa in Kildare on July 23rd said they are aiming to raise €400,000 for Debra, the national charity supporting the 300 people living in Ireland with EB.
Emma endures the most severe form of the rare, genetic disease (recessive dystrophic EB), with a current life expectancy of 30-35 years. Known as ‘Butterfly Skin’, the condition causes excruciating blisters from the mildest touch.
![Emma Fogarty, pictured during extremely painful bandage changes, says no-one expected her to survive for this long because people with her type of EB rarely do. Photograph: Richard Sheehy.](https://www.irishtimes.com/resizer/v2/UCES27JLYJF2DJAGMFHUQ6Y25Q.jpg?auth=08531a2152ed849d61aa172f6d526c551ad0e6605dea8a13fd3c9479c6344880&width=800&height=533)
“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.”
Funds raised through ‘Emma’s Run to 40′ will support research to improve life for those with EB in Ireland.
- Sign up for push alerts and have the best news, analysis and comment delivered directly to your phone
- Join The Irish Times on WhatsApp and stay up to date
- Listen to our Inside Politics podcast for the best political chat and analysis