Amazing Laois woman is one in a million

AMAZING Abbeyleix woman Emma Fogarty has handed over €1m to EB charity Debra, almost a year after her courageous Dublin Marathon fundraiser with Hollywood star Colin Farrell.

At 41, Emma is the longest-living person in Ireland battling the most severe form of the skin condition epidermolysis bullosa (EB).

When Emma was born in June 1984, her parents Patricia and Malachy were told that she would not survive beyond a week and that she would be better off, as EB is such a cruel condition. She has not only disproved all predictions but has overcome cancer twice.

Emma said it felt like crossing the marathon finishing line again, as she made the remarkable cheque presentation to Debra. The charity initially hoped to raise €400,000 during 'Emma’s Run to 40', marking her 40th birthday in 2024.

That target soared after she and stalwart supporter Colin appeared on The Late Late Show ahead of last October’s race. Further donations saw it hit the €1m mark, funds which will be used to fuel crucial research into the incurable and agonising condition.

At the cheque presentation in Killashee House Hotel in Naas, Co Kildare, Debra chief executive Jimmy Fearon described the €1m boost to the charity as “a tremendous testament” to Emma and Colin.

He said: “This incredible gesture was born out of their close friendship and the shared passion they have for EB and the need to one day find a cure.” 

Emma battles the most debilitating form of EB, with the slightest touch causing extremely painful blisters that require regular bandage changes. The normal life expectancy is 30-35 years.

Her remarkable valour comes at a severe cost. Eighty per cent of her body is covered in bandages to prevent wound infection and changing them takes four harrowing hours every second day.

With typical determination, Emma persuaded Colin to take on the full 42km marathon and push her in her wheelchair for the final 4km, each kilometre representing a decade of her life.

Colin declared at the finish line: “All the credit goes to Emma on this one. I’m thrilled, but not really surprised, that Irish people dug so deep to support my good friend and the charity which looks after those living with EB and their families.

“But the fight doesn’t end here. As long as people are still living with the extreme pain of EB, there will be a need for public support.” Looking back a year on, Emma said the fundraising marathon was an amazing experience.

She said: “The nature of EB means I knew that for those 4km, I would feel everything impact on my skin, every little bump on the road, every pebble and twist and turn and I did. But because the money raised provides hope to others and funds research into this condition, I was prepared to endure that.” 

 For more information or to donate, visit debra.ie.