The money will go towards services for Ireland’s 300 sufferers of epidermolysis bullosa, or ‘butterfly skin’
A moving interview on The Late Late Show last week helped the pair raise over €665,000 for charity Debra Ireland, which provides supports for the 300 people in Ireland who suffer from EB.
Race director Jim Aughney and Declan Bolger, CEO of the race’s sponsor, Irish Life, yesterday presented a €20,000 donation to the charity, which was accepted by the pair ahead of the starting gun on Sunday.
Ms Fogarty, who lives with recessive dystrophic EB, a severe form of the condition that means sufferers have a life expectancy of 30 to 35 years, will join the Oscar nominee for the final 4km of the journey through Dublin – each final kilometre representing a decade of her life.
The condition is sometimes referred to as “butterfly skin” as it can break, tear and blister the skin even through minor friction and movement, with Ms Fogarty telling RTÉ radio 1’s Ray D’Arcy Show this week that it “will not be easy”.
“It sounds very little, but for me, it’s the potholes, the ramps, even a pebble, I feel every single one of those… I will go home with new wounds and many more blisters,” she said.
“I’m 40. I’ve have had cancer twice, I had pneumonia, I had sepsis, I had a very close scare a couple weeks ago. I have been through hell and back and to just have someone there who is not your family, not your friend, who is just there and listens to you and understands the reality of your day-to-day life and all the fears that come along with it.”
Ms Fogarty said she “bawled” her eyes out before turning 40, adding: “With my form of EB in Ireland, nobody has turned 50 and I’m terrified of that.”
She said she wants to live a normal life and there needs to be greater support for those in her situation.
The charity needs €695,000 in funds to provide one year of care and home-nursing supports to the 300 people who live with EB in Ireland.
The HSE has pledged €125,000 in core funding for Debra for the first time, but it is a figure that Farrell (48) and Fogarty have said is insufficient. They have called on the Government to match the €695,000 they hope to raise ahead of the Dublin Marathon.
“I love Emma, I love her to bits. I couldn’t be any more proud of her. But I don’t think I could be any more frustrated knowing that Emma and all those in our country who suffer with EB aren’t getting the care they could,” Farrell said.
