She shocked doctors by living to 41 with rare ‘butterfly’ disorder. She also picked up a celebrity friend along the way
Emma Fogarty’s body is at least 80 percent covered in wounds at all times – but the 41-year-old gives no indication of the relentless pain, likened to the searing agony of third-degree burns, as she laughs in the car with her mother and friend on their way home from a Christmastime lunch.
She was looking forward to Christmas Day, when she stays home every year with her parents and sister to watch Home Alone and enjoy a Bailey’s latte; it’s the one day of the year she takes off from agonizing bandage changes and the near head-to-toe wrapping regularly protecting her. That’s Emma’s reality of living with the most severe form of Epidermolysis Bullosa, a rare condition in which skin tears away like paper – or a butterfly’s wing.
EB is so uncommon that only one out of every 50,000 people will be affected worldwide. Young sufferers are called “butterfly children” – and Emma joined their ranks when she was born in 1984, when doctors told her parents that she wouldn’t survive a week.
Now, more than four decades later, Emma is one of the oldest living people in the world with EB. She’s confined to a wheelchair, almost entirely covered in bandages, her fingers fused together and her left leg amputated. She has fought bravely for her own quality of life despite “trapped in a body that has been punishing to inhabit,” according to the author of the foreword of her new memoir, Being Emma.
The foreword author, a man she nonchalantly texts and banters with on a regular basis, is none other than actor Colin Farrell. He sat down next to Emma at a charity event in 2010, greeted her with his trademark Dublin “Howyah” and followed that with: “I’m starving, are you?’
Then he stared down a waiter to help Emma secure plain mashed potatoes for her meal; she’d been served a portion with raw onions, and EB scarring constricts her throat so much that she can barely force down anything–let alone raw vegetables. For years, she underwent regular throat surgeries to stretch the scar tissue and help her swallow.
Colin’s glance at the server that night “hit home,” Emma writes in her memoir, published in the U.S. this month. “I think the waiter would have picked the onions out by hand after he saw it.”
The evening planted the seed of a friendship that would grow incredibly close between two people just eight years apart.
“We sat down beside each other, and we just felt like we’d known each other 100 years,” Emma, who lives in Co. Laois, Ireland, tells The Independent. “And then it just progressed on and on.”
As Emma overcame battle after battle – from cancer diagnoses to sepsis and pneumonia – Colin supported her from 3,000 miles away … and joined her for tea at home with her family on his visits back to Ireland.
“From the start, I always just wrote to him like I would any friend, filling him in on my life and asking questions about his,” Emma writes in the new memoir. “He began to respond to me in the same way. We still write to one another a lot, and talk, like friends do, about deep and personal things …He can trust me – that’s the truth – and I can trust him. That is sacred to me.”
The bond led to Colin’s suggestion that he run the Dublin Marathon to raise awareness and funds for Debra Ireland, the EB charity where he’s a patron and Emma’s a spokeswoman. That, in turn, evolved into the movie star pushing Emma down the bumpy last 4km-stretch of the 2024 race, one kilometer to celebrate each of the four decades she’s survived with EB.
Pictures of the touching sight — Emma bandaged in a wheelchair, Farrell’s face set with determination as he pushed her against a backdrop of marathon runners – went global. A book deal quickly followed.
Emma, encouraged by her loved ones and Farrell, jumped at the chance to tell her story and educate the world about a rare condition that is devastating. EB leaves sufferers open to infection and sepsis, also affecting a huge swathe with osteoporosis. A fault in the genes means that proteins needed to hold the skin together – and tiny everyday activity like rubbing against sheets or simply wearing shoes can cause torturous wounds.
