Sign in. It’s quick, free and it’s up to you.
An account is an optional way to support the work we do. Find out more.
AHEAD OF ITS premiere at Dublin’s Light House Cinema this evening, documentary The Slightest Touch was already preparing to carry Emma Fogarty’s story beyond Irish shores.
Directed by Rachel Fleit, the film follows Fogarty, an avid campaigner and the oldest person in Ireland living with the most severe form of the recessive skin condition Epidermolysis Bullosa (EB), as she marked her 40th birthday – age doctors once said she would never reach – and accepted an offer from her longtime friend Colin Farrell.
Farrell pledged that they would take on the Dublin Marathon together to raise awareness for EB and funds for EB charity DEBRA, and that he would push her wheelchair for the final four kilometres of the race.
Fogarty and Farrell have been friends for 16 years, having met at a charity dinner Colin was attending for DEBRA.
Speaking to The Journal, Fogarty, now aged 41, said she was still processing the news that HBO Documentary Films had acquired worldwide rights.
“It was amazing,” Fogarty said.
“We were hoping for someone to pick it up, but HBO? That’s one of the biggest networks in the world. For them to want our documentary, it was just ‘wow’.”
For Fogarty, from Abbeyleix in Co Laois, the global scale of the release felt surreal.
“I’m just a small-town girl living at home with my parents,” Fogarty said.
“We’re just normal. So for the world to see us, Americans, everyone, it’s mad. But it’s also incredible, because the documentary is about love and care and community.”
The Slightest Touch charts not only the Dublin Marathon, but the years of friendship that sustained both Fogarty and Farrell through personal challenges, including the loss of her leg in 2019.
That reality is woven through the documentary, which will premiere on Rare Disease Day (28 February), but Fogarty was keen to stress that the film is not simply about suffering.
“It’s about friendship,” Fogarty explained.
“It’s about what can happen when someone stands beside you and says, ‘I’ve got you.’ The marathon was symbolic, yes, the last four kilometres for the last four decades, but it was really about the years behind that.”
It also doesn’t shy away from the realities of EB, the rare genetic condition that leaves Fogarty’s skin so fragile that it blisters and tears at the slightest friction.
“People see the bandages,” she said.
They don’t know what’s beneath them. They don’t see the pain. It’s a 24/7 daily battle.
Even on the morning of her conversation with The Journal, she explains that she had undergone a four-hour bandage change, a ritual repeated every second day.
“There are actually no words for the pain,” Fogarty explained. “Sometimes just living is hard.”
Bandage changes dictate the rhythm of her life. Her parents have long been central to that routine, helping to clean and re-dress wounds. The exhaustion afterwards is total, Fogarty said.
“You’re drained,” she said. “Physically and mentally.”
“It takes everything out of you. And then you just have to get on with the day.”
Despite this, Fogarty still has an extemely positive outlook on life and advocacy, an attitude which drove her to completing the marathon with Colin Farrell in 2024.
It was Hollywood A-lister Farrell who first floated the idea of the marathon a number of years ago.
Fogarty recalled him suggesting they mark her milestone birthday by doing something meaningful, something that would raise funds and awareness for DEBRA, where she serves as an ambassador and board member.
“He just said it one day,” she laughed. “What about the marathon? And I thought he was joking. But he wasn’t.”
The plan evolved into completing the final four kilometres together, with Farrell pushing her wheelchair across the finish line. As the date approached, the challenge took on a life of its own.
Many viewers will remember their appearance on The Late Late Show in October 2024, when they spoke about the marathon and the reason behind it.
The response was immediate and overwhelming – donations poured in, and by the end of the campaign, more than €1 million had been raised for DEBRA.
“It became something bigger than us,” Fogarty said.
It wasn’t a sad story. It was two friends doing something together. And the country got behind it. That meant everything.
She described her friendship with Farrell as grounded and unglamorous, built on honesty and humour.
“We’re like an old married couple,” she said, laughing. “We bicker. We slag each other. But there’s huge trust there.”
That trust was particularly important on marathon day. Navigating Dublin’s streets in a wheelchair during the marathon in October 2024 required careful handling. Farrell had to avoid potholes and uneven ground, slow for turns and manage the crowds.
“I was telling him, ‘Watch the kerb, watch the bump,’” she recalled.
“And he’d be telling me to relax. We were giving out to each other. But I trusted him implicitly. I knew he would never put me in danger.”
The documentary captures those exchanges, the teasing and the tenderness. It also shows the quieter moments, including the support Farrell offered during the process.
“He asked the hard questions,” Fogarty said.
“Not just, ‘How are you physically?’ but ‘How’s your head?’ That’s when I knew he was a friend for life.”
Rachel Fleit, who directed the documentary, embedded herself in that dynamic. Fogarty said she and Farrell both felt immediately comfortable with her.
“Rachel is just beautiful,” Fogarty said.
“Gentle and kind. She understood that this wasn’t about celebrity, it was about family and friendship.”
Filming stretched across intimate family spaces and public moments of huge visibility.
At one point during production, a napkin caught fire on a table during a gathering at a house in Dublin city ahead of the marathon, briefly setting part of the table alight and sending everyone scrambling.
“We actually set a table on fire,” Fogarty said, laughing.
That wasn’t in the plan. There was panic for a minute. It just shows you, even in serious moments, life is still life.
Watching the finished documentary was, she admitted, overwhelming.
“You relive it,” she said.
“You feel the nerves again, the joy again. But what struck me most was how normal we are. EB is part of our lives, but it’s not all of it. Family comes first. Friendship comes first.”
Her advocacy work has also extended to the page.
In her autobiography, Being Emma: Living My Best Life with Butterfly Skin, published last year, she chronicled her life from infancy, when doctors predicted she would live for just days, to becoming the oldest person in Ireland living with EB.
“I wanted people to understand,” she said of writing the book. “Not to feel sorry for me. Just to understand. There’s a difference.”
She hopes the documentary will achieve something similar, offering a window into the physical reality of EB while also challenging assumptions.
“When people see bandages, they make up a story in their head,” she said.
“This lets them see the truth. The pain, yes. But also the laughter, the family dinners, the friendships. We’re not defined by the condition.”
If there was one hope she held for The Slightest Touch, it was that the visibility would translate into tangible change.
“HBO picking it up is amazing, but the goal is bigger than that,” Fogarty said.
“We need specialist nurses funded. We need research. We need to eradicate this disease. DEBRA has done exceptional work for decades, but it shouldn’t even have to exist.”
“And when that day comes when EB is gone,” Fogarty laughed, “I’ll personally fire everyone in DEBRA.”
“That’s the dream,” she added.
“That we won’t need the charity anymore. That EB won’t exist. Imagine how brilliant that would be.”
The Slightest Touch premieres at The Light House on 28 February – more information is available here
To embed this post, copy the code below on your site
have your say