Emma Fogarty laughs warmly in the car with her mother and a friend, returning from a festive lunch. There is no outward sign that at least 80 percent of her body is covered in agonising wounds at any given moment, a relentless pain likened to third-degree burns. For the 41-year-old, this is the daily reality of living with the most severe form of Epidermolysis Bullosa (EB), a rare genetic condition where skin blisters and tears at the slightest touch, much like a butterfly's wing.
A Life Defying Predictions
When Emma was born in 1984, doctors told her parents she would not survive a week. Epidermolysis Bullosa is exceptionally rare, affecting roughly one in 50,000 people worldwide. Young sufferers are often called "butterfly children," a name that belies the brutal nature of a condition that leaves the skin fragile and constantly wounded. Now, more than four decades later, Emma Fogarty is among the oldest living people in the world with EB.
Her life has been a series of immense physical challenges. Confined to a wheelchair, she is almost entirely wrapped in bandages. Her fingers are fused together, and her left leg was amputated in 2019 following a cancer diagnosis—a common and severe complication for EB patients due to constant skin trauma. Despite being, as she describes, trapped in a punishing body, Emma has fought tirelessly for quality of life, even completing university and working in a Dublin bank before her health declined.
An Unlikely Friendship with a Star
The trajectory of Emma's life intersected unexpectedly with fame in 2010 at a charity event. She found herself sitting next to actor Colin Farrell. He greeted her with a casual Dublin "Howyah" and an immediate, relatable complaint of hunger. The encounter, which Emma says felt like meeting an old friend, was cemented when Farrell sternly ensured a waiter brought her plain mashed potatoes, as EB scarring had constricted her throat, making swallowing difficult.
That evening sparked a profound and enduring friendship. "We sat down beside each other, and we just felt like we'd known each other 100 years," Emma, who lives in County Laois, Ireland, recalls. The bond deepened over the years, with Farrell offering support from across the Atlantic as Emma battled sepsis, pneumonia, and cancer. He would visit for tea with her family when in Ireland, their connection rooted in mutual trust and down-to-earth camaraderie.
Emma believes Farrell's personal experience—his son lives with the rare genetic disorder Angelman's syndrome—created a natural empathy. "I think him having a son with a disability, he kind of gravitated to my family," she explains.
Marathon Efforts and a Message of Hope
Their friendship took a very public turn in 2024 when Farrell suggested running the Dublin Marathon to raise funds for Debra Ireland, the EB charity they both support. The plan evolved, culminating in the Hollywood star pushing Emma in her wheelchair for the final four kilometres—one for each decade of her life. The powerful images of their joint effort circled the globe, raising nearly €1 million and significantly boosting awareness.
The marathon was physically gruelling for Emma, leaving her with fresh wounds from the jostling, but she cherishes the experience. The publicity also led to a book deal. Her memoir, Being Emma, features a foreword by Colin Farrell and chronicles her life of pain, survival, and defiance. In it, she details the constant agony, describing how she suffers 90 to 99 percent of the day, finding respite only in sleep.
She writes of childhood bullying, of tights becoming fused to raw wounds, and of the devastating loss of friends within the EB community, including her best friend who died at 28. Yet, her message is ultimately one of fierce hope and determination. "I'm 41 now. I shouldn't be alive at all, in any way," she states, defying that initial week-long prognosis.
Emma Fogarty's greatest defiance, as Colin Farrell writes, is her insistence on living a full and meaningful life. She continues to campaign for better research, funding, and support for EB patients, using her voice and her extraordinary story to inspire others facing any manner of obstacle. With Farrell's ongoing support and a "big" joint project hinted for February, Emma's mission to educate and offer hope continues.
