Colin Farrell and Emma Fogarty, Ireland’s longest-surviving person battling epidermolysis bullosa (EB), have thanked big-hearted RTÉ The Late Late Show viewers who pushed their fundraiser to over half a million euro for charity Debra after their appearance on Friday night. (Oct 18)
The Hollywood A-lister joined longtime friend Emma Fogarty, who this year celebrated her ‘miracle’ 40th birthday, despite having the most severe type of the genetic skin condition.
The Penguin star told how he is gearing up for the Irish Life Dublin Marathon next Sunday to mark the milestone – and she will join him in a wheelchair for the final 4km – each kilometre representing a decade of her life.
Their ‘Run to 40’ challenge has raised over €500,000 for Debra, the national charity helping 300 people living in Ireland with EB, with €415,000 raised on the night alone.
“I am in a state of shock and absolute excitement, I can’t believe that this has been achieved,” said Debra CEO, Jimmy Fearon.
“Emma and Colin were outstanding and we are overjoyed with the funds raised – the good things we can do for families with EB is what this is all about.”
On Friday night, viewers responded in their droves to Emma’s story, donating by phone by calling 01 902 3938 or via Debra’s website, debra.ie.
“There are four forms of the condition and Emma has the severest one,” said Colin Farrell backstage.
“She is the third person in Ireland with her type of EB to reach the age of 40 – she’s a miracle really, and a legend.”
Speaking to host Patrick Kielty during the show, Emma highlighted the challenge the 4km distance will pose to her.
“Four kilometres sounds very little to a lot of people, there’s people here who probably run 10km every day or 5km or whatever,” she said.
“For me, that’s going to be a very long journey because potholes, ramps, even a pebble on the road – I will feel every one.”
Emma’s official birthday on June 25 last was one she was never expected to reach.
Born with no skin on her left foot and right arm, EB causes excruciating blisters on her skin at the mildest touch – the reason it is also known as ‘Butterfly Skin’.
Emma lives with recessive dystrophic EB, the most severe form of the rare genetic disease, with a current life expectancy of 30-35 years.
Funds raised during the Run to 40 drive will be used to fuel pioneering research which could transform the future for everyone with EB in Ireland.
If you can support the fundraising initiative, donate or join the Run to 40 fundraising effort at debra.ie/runto40 or on 01 902 3938.