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Emma Fogarty and Colin Farrell on The Late Late Show. Andres Poveda
Epidermolysis Bullosa

'It's inhumane': Colin Farrell criticises lack of funding for people living with rare skin condition

The actor will take part in the marathon alongside Emma Fogarty, who is Ireland’s longest-surviving person with Epidermolysis Bullosa.

COLIN FARRELL IS set to run the Dublin Marathon this year to raise money for people living with the genetic condition Epidermolysis Bullosa (EB).

The actor appeared on The Late Late Show alongside Emma Fogarty, who is Ireland’s longest-surviving person with the skin condition, which is also known as Butterfly Skin.

The condition makes skin so fragile that it can tear or cause painful blistering at the slightest touch.

Fogarty and Farrell have been friends for 14 years. To mark her 40th birthday, the actor will take part in Dublin Marathon on 27 October to raise money for Debra Ireland, the national charity helping 300 people living with EB in Ireland. 

Farrell will run in the marathon and push Fogarty in a wheelchair for the final four kilometres. 

Speaking about Fogarty, Farrell said: “She is wickedly funny and one of the most extraordinary human beings I’ve ever met.

“Her spirit and her sense of humour and her kindness, and her joy for life is astonishing, in spite of what she’s lived with.”

Farrell said that what Fogarty deals with every day “is extraordinary” and “so uncommonly cruel”. 

Lack of funding ‘inhumane’

He also criticised the Government for not allocating specific funding for people living with the condition, deeming it “inhumane”. 

“I get the ridiculousness of Mr Hollywood, Money Bags Farrell coming out and asking for money, that’s not lost on me,” Farrell said.

“But the government has a responsibility to the people of Ireland to look after the people of Ireland to the best of their ability, to cut corners where the people are going to suffer the least and to put the money where people are going to be given the most support and the help that they need.”

He said Debra Ireland has sought €695,000 from the Government for the last three years. This would go towards home nursing care, mental health support and outreach care for people living with EB.

No specific funding was allocated for EB care in the Budget, with Farrell adding that €695,000 for 300 people is “a drop in the ocean”.

Describing her condition, Fogarty said “hard is an understatement”.

“There’s no words for how to live with it day-to-day,” she said.

Today I had a full bandage change, four hours, the pain is excruciating. The pain is constant. Sitting here now, I’m in agony.

Fogarty, who is from Co Laois, said that when she was born, doctors told her parents that “I wouldn’t survive a week, and that it’d be better if I didn’t”.

On reaching her milestone birthday, Fogarty said there is “a lot I’d like to say” to the doctors.

“Part of me would love to say ‘in your face’. I have lived a really difficult life where there is no break. The pain is constant, the bandages are constant. It’s like a revolving door in our house. Doctors aren’t always right, and I think I’ve proved them wrong now.”

She also said that taking part in the marathon will take its toll on her physically.

“I’m going to sleep through November, literally. That’s not a joke. After the run, after the pain, after the exhaustion, I will sleep,” she said.

On taking part in the marathon with Farrell, Fogarty said: “Apart from my family, I trust no one more than you to push me for that last 4k.”

More information on Epidermolysis Bullosa can be found on Debra Ireland’s website

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