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SecondAt least 80 per cent of Fogarty’s mother’s body was always covered in wounds, but the 41-year-old laughed in the car on her way home from a Christmas lunch with her mother and friends that there was no sign she was experiencing searing pain akin to a third-degree burn.
She looked forward to Christmas, the one day of the year when she stayed home with her parents and sister to watch Home Alone and enjoy a Bailey’s latte; it was the one day of the year when she was freed from the painful changes of bandages and the regular, nearly head-to-toe wraps that protected her. This is the worst reality Emma lives in epidermolysis bullosaA rare disease in which the skin is torn like paper or butterfly wings.
EB is very rare, affecting only one in 50,000 people worldwide. Younger patients are called The “butterfly child” – Emma joined their ranks when she was born in 1984, when doctors told her parents she wouldn’t survive a week.
Now, more than 40 years later, Emma is one of the oldest EB patients in the world. She was in a wheelchair, almost all of her body was covered in bandages, her fingers were fused together and her left leg was amputated. she has Fight bravely for your quality of life Despite being “trapped in a body that was a constant torture to live in,” according to the author of the foreword to her new memoir, “Being Emma.”
The foreword was written by a man with whom she often casually texted and joked. It’s actor Colin Farrell. Sitting next to Emma at a charity event in 2010, he greeted her with his trademark Dublin “Howyah” before asking: “I’m hungry, what about you?”
He then looked down at a waiter who helped Emma prepare plain mashed potatoes for her meal. She ate a serving of raw onions and the EB scars restricted her throat so much that she could barely swallow anything, let alone raw vegetables. She had regular throat surgeries over the years to stretch the scar tissue and help her swallow.
Emma writes in her memoir, published in the US this month, that Colin’s glimpse of the server that night “hit home”. “I think the waiter saw it and picked out the onions with his hands.”
This night sowed the seeds of a friendship that would become incredibly close between two people eight years apart.
“We sat next to each other and it felt like we had known each other for 100 years,” said Emma, who lives in County Laois, Ireland. independent. “And then things just kept progressing.”
As Emma fought through one battle after another – from a cancer diagnosis to sepsis and pneumonia – Colin supported her from 3,000 miles away… and joined her family for tea at home when she returned to Ireland.
“From the beginning, I always wrote to him as I would any friend, telling him about my life and asking him questions,” Emma writes in a new memoir. “He started responding to me in the same way. We still write to each other regularly and talk about deep and personal things as friends… He can trust me – that’s the truth – and I can trust him. That’s sacred to me.”
The bond prompted Colin to suggest that he run the Dublin Marathon to raise awareness and funds for Debra Ireland. Debra Ireland is a patron of EB Charity, of which Emma is a spokesperson. This in turn evolved into the movie star pushing Emma through the final kilometer of the 2024 race’s bumpy section to celebrate her forty years with EB.
Photos of the touching scene – Emma sitting in a bandaged wheelchair and Farrell pushing her against a backdrop of marathon runners, a determined look on his face – were shared around the world. A book deal soon followed.
Encouraged by her loved ones and Farrell, Emma jumped at the chance to tell her story and educate the world about a devastating rare disease. EB predisposes patients to infection and sepsis and also affects a large number of patients with osteoporosis. The genetic defect means proteins are needed to hold the skin together, and small everyday activities, such as rubbing against sheets or simply putting on shoes, can lead to painful wounds.
Emma’s EB has been gradually worsening since birth. She defied the odds, completed university, lived independently and worked in a bank in Dublin – until normal activities caused her to fracture a bone in her foot, leaving her in decline and confined to a wheelchair. In 2019, cancer diagnoses ultimately require amputation; people with EB are particularly vulnerable to cancer; and, as Emma explains in the book, “Our skin is often injured and has a poor ability to heal, which makes it fertile ground for mutations.”
Emma says it was Farrell who pulled her out of the dark depression left by her amputation The Independent.
“He just wasn’t afraid to ask the hard questions,” Emma said. “He wasn’t afraid to say, ‘How’s your head, how’s your mental health, how are you feeling?’ … I think that’s when I knew, yeah, I have a lifelong friend here.”
She described the actor as “just a regular, down-to-earth guy who you could live next door to and say, ‘Well, what’s the story?'” He’d say, ‘Boss, would you like a cup of tea?’ ‘”
Emma also mentioned that the actor’s son, who was born in 2003, has a rare genetic diseaseAlso: Angelman syndrome, which causes developmental delays and seizures.
“I think he has a disabled son and he was a bit attracted to my family as well and we all get on really well now. We’re all close and he comes down [to our home] He eats a sandwich with his mother. “
Emma gained public attention while running a marathon – straining her back, thighs and lower back from the jostling during the race. The jeans she wore were frayed at the knees and thighs.
“Sadly, I did get injured, and it wasn’t Colin’s fault anyway, but… due to EB,” she told me independent.
But she endured the pain and still enjoyed the experience – just as she and Farrell Nearly 1 million euros were raised by participating in the marathon.
She then agreed to write the book – tracing a life of pain and triumph as she hoped it would be part of her legacy.
“It’s just a little bit of hope that I want to leave behind,” she said.
She writes not only about the daily pain and challenges, but also about how closely connected the victims were and how devastating their deaths were to others. She writes about surviving brutal school bullies as her condition has caused her daily pain. She writes that as a child, tight clothing would stick to her skin, “sealing and sticking to unhealed wounds.”
“My biggest problem is pain,” she said. “I suffer from it 90 percent, if not 99 percent, of the day, and the only time I don’t suffer from it is probably when I’m sleeping.”
She is pushing health systems to provide better funding, better research, better awareness and better support for EB patients. She had already lost her best friend to the disease, a man three years her senior whom she had known her entire life, who died at age 28 of EB-related cancer. Another child patient she was familiar with, Liam, was also too young.
Throughout her life she told independentDuring this time, she has seen awareness of EB increase and treatments improving, but there is currently no cure and support is still severely lacking.
“We still need to move on,” she told The Independent. “We still need to keep fighting.”
To that end, she tapped Farrell to promote her book; he released a new video urging fans to buy a copy for their loved ones as a Christmas gift. She told us that “something big happened in February” for the two of them too independent – though she’s too shy to reveal details.
She believes her mission to educate the world about EB and her family’s friendship with Farrell helped her reach a milestone age that many other patients have yet to reach. She hopes that other people who are suffering, as well as readers who are dealing with any obstacles in their lives, will know her story and have hope.
“My parents were told I wouldn’t live a week and I would be better off if I didn’t hold on… I’m 41 now,” she said. “Anyway, I shouldn’t be alive at all.
“To the EB family or others, I hope [them] If they’re determined enough, if you have enough strength in your bones and body, if you have enough fire in your belly… you can do anything in the world,” she said. “I’m serious. It doesn’t have to be the biggest thing in the world, just do what you want to do. “
Farrell writes in the book that Emma’s greatest rebellion was “her insistence on living a full and meaningful life. A life full of adventure and joy. Of course, this life was limited in many ways by epidermolysis bullosa, but hers was a life that shared so many laughs, so many friendships, chose and imposed so many challenges, and triumphed over them all.”
He concluded: “She is one of our greatest teachers, and if readers can feel even a little bit of the wonder, sadness, strength, and hope that I felt when I got to know her, then they will come away with a life that was fulfilled because they were in the company of this amazing woman.”