It’s estimated that about half a million people around the world are affected by a rare skin disease called epidermolysis bullosa (EB), better known as ‘butterfly skin’, that causes skin to blister and tear extremely easily.
On the 3rd of October, Debra Ireland charity shared on their social media very upsetting news that the government in Ireland has neglected to prioritize funding for EB care in its 2025 budget. Yet Emma Fogarty, the country’s longest survivor with this rare genetic condition, wasn’t going to give up and together with her old friend Colin Farrell, came up with an idea to participate in Dublin Marathon, in this way helping to raise nearly $700k for a charity.
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Colin Farrell finished Dublin Marathon while pushing his old friend Emma Fogarty in wheelchair
Oscar-nominated actor Colin Farrell finished the final 4 kilometers (2.5 miles) of the Irish Life Dublin Marathon while pushing his old friend Emma Fogarty in a wheelchair. The two friends met 16 years ago when Farrell had dinner with the biggest donor to Debra Ireland.
Emma was born with no skin on her left foot and her right arm, with the constant risk of developing excruciatingly painful blisters from just the slightest touch. 80% of her body is covered in layers of bandages just to be able to prevent wound infection. In her world, every single day is an unimaginably painful and difficult challenge, yet Emma has become a symbol of faith and strength for many people all around the world.
Therefore, each of those final 4 kilometers of the race represented a decade of the woman’s life.
“No one expected me to survive for this long – because people with my type of EB almost never do – but I’ve always been encouraged to be a fighter,” she shared. “Reaching 40 shouldn’t be a miracle, but right now, it is,” added the woman who is considered now Ireland’s oldest surviving person with the EB condition and who has also had two battles with cancer.
Colin, who has known Emma for many years, believes that she is what real courage and pure determination are all about.
“That run was nothing compared to the pain she is forced to endure every single day, even though she doesn’t show it,” the actor said. “It was an honour to see her waiting for me with 4km to go, each of those representing a decade of her life, and to do the final stretch together. I’ll never forget it,” he added.
Emma Fogarty suffers from a rare genetic condition called epidermolysis bullosa (EB), also known as ‘butterfly skin’, which causes excruciating blisters from the slightest touch
For Emma, participating in the marathon was a real dream come true, especially doing it with the most supportive, generous and loyal friend anyone could only wish for.
“He has always shown his compassion and empathy for people living with EB and is a true champion in my eyes,” the woman shared.
This is probably because Colin perfectly knows how challenging life can be, since his first son James Padraig Farrell was diagnosed with a rare neurological condition called Angelman syndrome when he was only a two and a half years old. Caring for him and watching his son grow up has given the actor the ability to look at the human being and the human body and life as a true marvel.
“I see how much he struggles with things that I’d never have given a second thought to, that many of us take for granted,” Colin said.
Inspired by his sons, in 2024, he launched the Colin Farrell Foundation that provides greater opportunities for families who have a child with special needs, to receive the support that they deserve.
“Basically the assistance in all areas of life, whether it’s education, whether it’s intervention, therapeutics, social environments that their child can feel like they belong within,” Colin explained. “I want the world to be kind to James. I want the world to treat him with kindness and respect.”
The actor mentioned that once the child is 21, all the safeguards in the country that are put in place, all the inclusive programs, special ed classes, go away; therefore, he wants to make sure that families with kids with special needs can still find a world of meaning and a life of connection for their children no matter the age.
“There are two things we take for granted every day – time and health. The moment you lose them, only then do you wake up,” said Joost Van Der Westhuizen, one of the greatest rugby players, who, for the last few years of his life, suffered from motor neurone disease (MND).
Colin and Emma seem to know this better than anyone else. Through their tried-and-true friendship bond they have shown the entire world how to not lose faith even in the most difficult circumstances and how to be grateful for life, since every single second of it is pure magic.
The internet was flooded with grateful messages after Colin Farrell’s supportive and meaningful gesture
