Wednesday 18 September 2019

'Today I started my day crying, and I will get in to bed crying': Actor Colin Farrell tells Emma Fogarty she's 'amazing'

Emma Fogarty chats to Ryan Tubridy about EB.
Emma Fogarty chats to Ryan Tubridy about EB.
Independent.ie Newsdesk

Independent.ie Newsdesk

Irish woman and former People of the Year winner Emma Fogarty opened up on last night’s Late Late Show about the horrors she endures every day due to her skin condition Epidermolysis Bullosa (EB).

EB, also known as butterfly disease, is a severe, rare genetic skin blistering condition where the skin is as fragile as the wings of a butterfly.

Her skin blisters and tears at the slightest touch, and the condition has left 80pc of her body covered with open sores. 

There is no cure for EB, and the only form of treatment is constant, painful bandaging of the skin. 

The Laois woman, formerly was a mortgage advisor, explained to viewers how even the task of getting to the Late Late Show yesterday was a huge challenge.

“It’s constant pain. Even sitting here now, I put on a smile for everyone, for you [to Ryan], for Colin, but I think inside I’m crying, because today for example – I've rested all week, I’ve stayed in bed all week just to be here today, for the endurance of today.”

Emma Fogarty with Colin Farrell and Ryan Tubridy
Emma Fogarty with Colin Farrell and Ryan Tubridy

“This morning I got up, I started a four-and-a-half-hour bandage change with Georgina and my nurse Denise, and they did that, and it was torturous as always, and I was crying and screaming, it was very upsetting.”

“Then I tried to take a cat nap as they say, and I took that, because you need that – to re-energise yourself, and then I got ready and came up here.”

“The journey in itself is very difficult so that’s here, and then being here and going home.”

“Today I started my day crying and I will get into bed today crying.”

Hollywood actor Colin Farrell, who has been friends with Emma since he first contacted her to congratulate her on her People of the Year award in 2010, appeared alongside Emma on the Late Late couch next to Emma and described her as “amazing”.

“You’re the most amazing person I’ve ever met, I mean you really give what I would call ‘strength’ a kick in the h**e for your bravery. I mean you’re just so inspiring.”

Farrell also paid tribute to his son James, who has the genetic disorder Angelman syndrome, which mainly affects the Central Nervous System.

"He's magic," Farrell said. "And, you know, life seems to present itself with all these different deviations from what we call 'the norm' or 'the typical'. And my James, as Emma has her own genetic deviation from what is typical, my son has a genetic deviation from what is typical. And he has Angelman syndrome, and he's magic."

"He's a very inspiring young man," he explained. "He has had his own trials and tribulations and has reached benchmarks in his life."

"You know, he took his first steps as I've said before when he was two weeks short of his fourth birthday. We talk about a child taking their first steps as being a profound moment in a child's life or a parent's life. But if you're told your child might not ever walk, try those steps on for size when you see those ones...

"He's brilliant. He uses an iPad to communicate. He's moody, he's cheeky, though he's, I think, incredibly happy. He's strong-willed. Yeah, he's a magic, magic young man."

Emma and Colin appealed to the public to help raise funds for Debra Ireland, which supports families living with EB, by texting "BUTTERFLY" to 50300 to donate €4, and see www.debraireland.org.

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