This is an extract from the first chapter of the remarkable memoir, Being Emma: Living My Best Life with Butterfly Skin by Emma Fogarty.
When my mother, Pat, was pregnant with me, there was no need for anyone to worry. It was her first baby and things went along as normal. There were no warning signs, no unusual scans. Labour went ahead with no alarm bells, nothing to cause any concern.
But as soon as I arrived into the world, all of our lives – my mother’s, my father’s and mine – were changed. I was born badly wounded, with no skin at all on my left foot, and they didn’t know why. Then a nurse tried to feed me and the metal edge of her little nurse’s watch hit off my cheek and pulled the skin off it. Just a normal smooth-sided watch – something every nurse used to wear – and it injured me so badly. My skin was like tissue paper.
‘We don’t know what’s wrong with this baby,’ the doctor said to my mom and dad and, just like that, the floor dropped out from under them.
The doctors were baffled. They sent a sample of my skin away for testing. As they waited, my parents rang their loved ones. My dad’s mother, Nana Fogarty, set down the phone and made arrangements to get up to Dublin. As soon as she could, she drove to the hospital without stopping. I imagine she prayed all the way there.
By the time Nana Fogarty arrived in the hospital, I had been baptised, just in case. In those days Ireland was still fully immersed in the idea that purgatory and limbo existed, and so, within hours of my birth, a priest was called. He blessed some tap water and gently poured it over my head. That was my christening. Just Mom, Dad and the priest were there. My name, chosen quickly from the shortlist they’d hoped to mull over, was Emma.
Also by the time Nana Fogarty got there, the biopsy results had come back. My parents had an answer. Now they knew what was wrong with this baby.
The words were new to everyone in the room: Epidermolysis Bullosa. The words that would come to define my whole life.
‘She won’t live a week,’ the paediatrician said. And just like that, my life was given an expiry date. Just like that, there was a ticking clock.
He added something else. ‘I’m sorry to say this, but she would be better off if she didn’t.’
Skin Like Paper
My aunt Angela was the first person my mom told.
‘Her skin is like paper,’ she said, ‘I don’t know what to do.’
Angela hung up the phone and ran straight away across the back fields behind her house to bang on the door of a nurse she knew. She wouldn’t have known this woman well enough to bang on her door like that, but she did it anyway because she just needed something, anything – an answer that would give my mother hope.
The nurse told her everything she knew, but her words hurt.
‘Babies with that condition rarely make it,’ she said, ‘and if they do it’s a very hard illness to live with; there will be no quality of life whatsoever.’
I’ve been told this story so many times it plays in my head like a film – my aunt running all that way to get hope, information, a reason. I don’t know what it would have felt like for my family to hear such devastating news delivered so sharply. Although I definitely know what that baby would have felt when her skin tore. Because I still feel that every day and have done for my entire life.
I couldn’t suck on a bottle because the rubber tore my lips, so I was a ball of frustration until they figured out how to drip milk into my mouth. My mother cut a hole in the teat so the milk could be brought out without much work, and I was fed that way – drop by drop, hour by hour.
On my mom’s side, the Bowens mobilised and gathered in Angela’s house – my aunts Marguerite, Martina, Marie and my uncle Sean – to start making baby clothes inside out so the seams wouldn’t harm me. They sewed through the night to get clothes to Mom so she could dress me.
That memory, though it’s not mine directly, burns so vividly in my heart.
Aunt Angela, God bless her, also bought me my first doll. I still have it, a little soft thing with long legs and closed eyes stitched on. Sleeping Dolly became her name. I clung to her then and sometimes still cling to her now. Sleeping Dolly became one of those sacred belongings that babies (and grown-ups) cannot be without. Myself and Sleeping Dolly have been through a lot.
‘I think Emma is a survivor.’
I spent the first few months of my life in Crumlin Hospital, in and out of incubators.
Despite what the doctor had said, I lived a week, then a month, and when I was three months old, they told my parents there was nothing they could do for me.
‘We are sorry for you,’ they told them, ‘but your child will not live for long.’
‘I think Emma is a survivor,’ my mother said.
‘Well, if she lives,’ came the reply, ‘she will have a very hard life. You should take her home.’
So they did. They brought me back to the home we still live in, in Abbeyleix, County Laois.
That was probably the moment when my parents could have given up on me. No one would have blamed them. They’d been told I could never survive this condition. But I think my mother decided then and there that even if that was the case, I would have a life. Not an existence, a life. Even if it was just a few months or a year, there would be family and friends and adventures.
(c) Emma Fogarty
Emma Fogarty lives in Laois and is one of just 300 Irish sufferers of Epidermolysis Bullosa, a painful disease which makes her skin as fragile as a butterfly’s wing. At 41, she is the oldest living Irish person with the condition. As an ambassador for DEBRA Ireland, she took part in the Dublin Marathon alongside her close friend Colin Farrell, raising almost €1 million for the organisation. This is her story.
About Being Emma: Living My Best Life with Butterfly Skin by Emma Fogarty
Born with Epidermolysis Bullosa (EB), a rare and excruciatingly painful condition that makes her skin as fragile as butterfly wings, Emma Fogarty was not expected to survive infancy. Today, at 41 years of age, she is the oldest living Irish person with the condition, continuing to defy the odds with extraordinary strength, resilience and remarkable achievements.
However, every accomplishment Emma makes comes with its own set of obstacles. EB is a cruel disease which causes her skin to blister and tear at the slightest touch. She can no longer walk, and she lost the use of her fingers when they fused together. Her bandages need to be changed every two days, an agonising process which takes hours. Emma’s daily life is a battle against debilitating pain, yet she embraces every moment with fierce positivity and determination.
In 2024, she took part in the Dublin Marathon alongside her close friend Colin Farrell to mark her 40th birthday, raising over €1 million for DEBRA Ireland. Emma’s skin may be fragile, but her spirit is unbreakable – shattering every expectation and lighting the way for everyone who dares to dream beyond their circumstances.
Order your copy of Being Emma online here.
And you can read more inspiring Meet the Author memoir articles on Writing.ie here.
