{"id":206299,"date":"2025-12-27T15:33:04","date_gmt":"2025-12-27T15:33:04","guid":{"rendered":"https:\/\/www.newsbeep.com\/il\/206299\/"},"modified":"2025-12-27T15:33:04","modified_gmt":"2025-12-27T15:33:04","slug":"emma-fogarty-discuss-friendship-with-colin-farrell-and-her-rare-genetic-disorder","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/il\/206299\/","title":{"rendered":"Emma Fogarty discuss friendship with Colin Farrell and her rare genetic disorder"},"content":{"rendered":"

\"Evening<\/p>\n

The latest headlines from our reporters across the US sent straight to your inbox each weekdayYour briefing on the latest headlines from across the USYour briefing on the latest headlines from across the US<\/p>\n

\"Evening<\/p>\n

Emma Fogarty\u2019s 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.<\/p>\n

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\u2019s latte; it\u2019s the one day of the year she takes off from agonizing bandage changes and the near head-to-toe wrapping regularly protecting her. That\u2019s Emma\u2019s reality of living with the most severe form of Epidermolysis Bullosa<\/a>, a rare condition in which skin tears away like paper – or a butterfly\u2019s wing.<\/p>\n

EB is so uncommon that only one out of every 50,000 people will be affected worldwide. Young sufferers are called<\/a> \u201cbutterfly children\u201d \u2013 and Emma joined their ranks when she was born in 1984, when doctors told her parents that she wouldn\u2019t survive a week.<\/p>\n

Now, more than four decades later, Emma is one of the oldest living people in the world with EB. She\u2019s 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<\/a> despite \u201ctrapped in a body that has been punishing to inhabit,\u201d according to the author of the foreword of her new memoir, Being Emma.<\/p>\n

The foreword author, a man she nonchalantly texts and banters with on a regular basis, is none other than actor Colin Farrell<\/a>. He sat down next to Emma at a charity event in 2010, greeted her with his trademark Dublin \u201cHowyah\u201d and followed that with: \u201cI\u2019m starving, are you?\u2019<\/p>\n

\"Emma<\/p>\n

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Emma Forgarty and Colin Farrell bonded over her rare genetic condition. Their friendship blossomed and included running a Dublin race together. Now, she is discussing her condition, their friendship and her new book. (PA)<\/p>\n

Then he stared down a waiter to help Emma secure plain mashed potatoes for her meal; she\u2019d been served a portion with raw onions, and EB scarring constricts her throat so much that she can barely force down anything\u2013let alone raw vegetables. For years, she underwent regular throat surgeries to stretch the scar tissue and help her swallow.<\/p>\n

Colin\u2019s glance at the server that night \u201chit home,\u201d Emma writes in her memoir, published in the U.S. this month. \u201cI think the waiter would have picked the onions out by hand after he saw it.\u201d<\/p>\n

The evening planted the seed of a friendship that would grow incredibly close between two people just eight years apart.<\/p>\n

\u201cWe sat down beside each other, and we just felt like we\u2019d known each other 100 years,\u201d Emma, who lives in Co. Laois, Ireland, tells The Independent. \u201cAnd then it just progressed on and on.\u201d<\/p>\n

As Emma overcame battle after battle \u2013 from cancer diagnoses to sepsis and pneumonia \u2013 Colin supported her from 3,000 miles away \u2026 and joined her for tea at home with her family on his visits back to Ireland.<\/p>\n

\u201cFrom the start, I always just wrote to him like I would any friend, filling him in on my life and asking questions about his,\u201d Emma writes in the new memoir. \u201cHe 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 \u2026He can trust me – that\u2019s the truth – and I can trust him. That is sacred to me.\u201d<\/p>\n

\"Farrell<\/p>\n

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Farrell has served as a \u2018down-to-earth\u2019 support for her as she battles the condition that leaves her in constant pain (Courtesy of Emma Fogarty)\"Fogarty<\/p>\n

open image in gallery<\/p>\n

Fogarty was diagnosed with Epidermolysis Bullosa, a rare condition in which skin tears away like paper – or a butterfly\u2019s wing (Courtesy of Emma Fogarty)<\/p>\n

The bond led to Colin\u2019s suggestion that he run the Dublin Marathon to raise awareness and funds for Debra Ireland, the EB charity where he\u2019s a patron and Emma\u2019s 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\u2019s survived with EB. <\/p>\n

Pictures of the touching sight \u2014 Emma bandaged in a wheelchair, Farrell\u2019s face set with determination as he pushed her against a backdrop of marathon runners \u2013 went global. A book deal quickly followed. <\/p>\n

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 \u2013 and tiny everyday activity like rubbing against sheets or simply wearing shoes can cause torturous wounds.<\/p>\n

Emma\u2019s EB has been worsening progressively since birth. She defied odds, finishing college, living independently and working at a bank in Dublin \u2013 until normal activity broke a bone in her foot, leading to a decline that left her wheelchair bound. A cancer diagnosis would ultimately require the amputation of the leg in 2019; EB sufferers are particularly susceptible to cancer; as Emma explains in the book, \u201cour skin is wounded so often and heals so poorly, it becomes fertile ground for mutations.\u201d <\/p>\n

It was Farrell who pulled her out of the dark depression the amputation left her in, Emma tells The Independent.<\/p>\n

\u201cHe just wasn\u2019t afraid to ask the hard questions,\u201d Emma says. \u201cHe wasn\u2019t afraid to say, \u2018How\u2019s your head, how\u2019s your mental health, how are you feeling?\u2019 \u2026 I think that\u2019s when I knew, yeah, I have a friend for life here.\u201d<\/p>\n

She talks about the actor as \u201cjust a normal, down-to-earth guy that you could live next door to and go, \u2018Well, what\u2019s the story?\u2019 And he\u2019d go, \u2018Grand, do you want a cup of tea?\u2019\u201d<\/p>\n

Emma also alludes to the fact that the actor\u2019s son, born in 2003, suffers from a rare genetic disorder<\/a>, too: Angelman\u2019s syndrome, causing developmental delays and seizures.<\/p>\n

\u201cI think him having a son with a disability, he kind of gravitated to my family, as well, and we all just really get on now. We\u2019re all really close, and he comes down [to our home] and he has the sandwiches with Mam.\u201d<\/p>\n

\"\u2018I<\/p>\n

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\u2018I suffer with it 90 if not 99 percent of the day, and the only time I don\u2019t suffer with it is probably when I\u2019m asleep,\u2019 Fogarty said (Courtesy of Emma Fogarty)<\/p>\n

Emma built upon the publicity from the marathon – where the jostling left her back, thighs and backside raw; the denim jeans she was wearing scuffed against her knees as well as her thighs. <\/p>\n

\u201cI did, sadly, get injured, not on Colin\u2019s part in any way, but \u2026 due to EB,\u201d she tells The Independent. <\/p>\n

But she bore the pain, still savoring the experience – as she and Farrell<\/a> raised nearly \u20ac1million euro through the marathon participation.<\/p>\n

And then she agreed to write the book – tracing a lifetime of pain and triumph as part of what she hopes will be her legacy.<\/p>\n

\u201cIt\u2019s just something I want to leave behind that\u2019s a bit hopeful,\u201d she says. <\/p>\n

She writes not just of the everyday pain and challenges but of how close-knit sufferers can be – and how their deaths hit the others devastatingly hard. She writes about surviving cruel school bullies who targeted her for the condition already causing daily agony. She writes about how tights could become stuck to her skin as a child, \u201csealed on and stuck into the raw wounds.\u201d <\/p>\n

\u201cMy biggest problem is pain,\u201d she states. \u201cI suffer with it 90 if not 99 percent of the day, and the only time I don\u2019t suffer with it is probably when I\u2019m asleep.\u201d<\/p>\n

She\u2019s pushing for better funding, better research, better awareness and better support from health systems for EB patients. She already lost her best friend to the condition, a man three years her senior she\u2019d known all her life who succumbed to EB-related cancer at 28. Another child sufferer she knew well, Liam, was also taken far too young from this world.<\/p>\n

\"Fogarty<\/p>\n

open image in gallery<\/p>\n

Fogarty is using her new book to share her life story and condition (Courtesy of Emma Fogarty)\"Fogarty<\/p>\n

open image in gallery<\/p>\n

Fogarty greatest defiance, Farrell notes, \u2018is her insistence on living a full and meaningful life. A life of adventure and joy. A life that is, of course, limited in many ways by Epidermolysis Bullosa, but a life that has shared so much laughter, so much friendship, had so many challenges chosen and imposed, and has triumphed over them all.\u2019 (PA)<\/p>\n

In her lifetime, she tells The Independent, she\u2019s seen improvements in awareness about EB and some evolution of treatments – but there is no cure and supports are still sorely lacking.<\/p>\n

\u201cWe still need to keep going,\u201d she tells The Independent. \u201cWe still need to keep fighting.\u201d<\/p>\n

To that end, she has Farrell plugging her book; he released a new video urging fans to buy copies for their loved ones as Christmas gifts. The pair of them \u201chave something big happening in February,\u201d too, she tells The Independent – though she coyly won\u2019t share details.<\/p>\n

She believes her mission to educate the world about EB, along with her family and Farrell\u2019s friendship, has helped her reach milestone ages that so many other patients have not. And she wants fellow sufferers, along with readers dealing with any type of obstacles in their lives, to learn her story and have hope.<\/p>\n

\u201cMy parents were told that I wouldn\u2019t last a week and I\u2019d be better off if I didn\u2019t \u2026 I\u2019m 41 now,\u201d she says. \u201cI shouldn\u2019t be alive at all, in any way.<\/p>\n

\u201cFor EB families or others, I want [them] to take away that if they\u2019re determined enough, if you\u2019ve enough strength in your bones and your body, if you have enough fire in your belly \u2026 you can do anything in the world,\u201d she says. \u201cI mean it. It doesn\u2019t have to be the biggest thing in the world, but just do something that you want to do.\u201d<\/p>\n

Emma\u2019s greatest defiance, writes Farrell for the book, \u201cis her insistence on living a full and meaningful life. A life of adventure and joy. A life that is, of course, limited in many ways by Epidermolysis Bullosa, but a life that has shared so much laughter, so much friendship, had so many challenges chosen and imposed, and has triumphed over them all.\u201d<\/p>\n

He concludes: \u201cShe\u2019s one of the greatest teachers we have, and if the reader can feel even an ounce of the wonder, the sorrow, the strength and hope that I have felt in knowing her, then they will walk away with a life enriched for the time spent in the company of this amazing woman.\u201d <\/p>\n","protected":false},"excerpt":{"rendered":"The latest headlines from our reporters across the US sent straight to your inbox each weekdayYour briefing on…\n","protected":false},"author":2,"featured_media":206300,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[32],"tags":[458,146,85,46],"class_list":{"0":"post-206299","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-celebrities","8":"tag-celebrities","9":"tag-entertainment","10":"tag-il","11":"tag-israel"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts\/206299","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/comments?post=206299"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts\/206299\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/media\/206300"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/media?parent=206299"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/categories?post=206299"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/tags?post=206299"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}