Emma was born with a painful condition that leaves her skin as delicate as tissue paper – but her uplifting new book tells of a romantic dance at the debs, a friendship with Colin Farrell and a chance meeting (kind of!) with Ed Sheeran

‘Imagine that just being is painful… that a hug can cause a wound, that wearing clothes can tear your skin.’ This is the daily reality for Emma Fogarty. At 41, Emma is the longest living Irish person with Epidermolysis Bullosa (EB), a rare and excruciating condition that leaves the skin as delicate as tissue paper. Living with EB means daily bandaging, constant wound care and a lifetime of managing pain, risk of infection and complications. There is no cure.

Despite the immense difficulties Emma faces in everyday life, she continues to defy the odds with her extraordinary strength and resilience. Being Emma – introduced by her great friend and advocate Colin Farrell – is a raw, powerful and deeply moving autobiography.

‘Emma is 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,’ Colin writes.

EB is an extremely rare and excruciatingly painful condition that affects 1 in 50,000 people globally. For sufferers, it makes their skin as fragile as a butterfly’s wing.

‘My mother tells me that when I was born the room fell deathly silent,’ Emma writes. ‘She knew something was wrong, but she didn’t know what. Neither did the nurses, nor the doctor they rushed to find. ‘That silence didn’t last because I began to cry, and my mother tells me I didn’t stop at all. Because I was born in terrible pain.’

Emma was not expected to survive infancy. Today, she is the oldest living Irish person with the condition, continuing to defy the odds with strength, resilience and remarkable achievements.

However, every accomplishment Emma makes comes with its own set of obstacles. 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.

Despite this, Emma embraces every moment with fierce positivity and determination.

In 2024, she took part in the Dublin Marathon alongside Colin Farrell to mark her 40th birthday, raising almost €1 million for DEBRA Ireland.

Emma’s skin may be fragile, but her spirit is unbreakable – lighting the way for everyone who dares to dream beyond their circumstances.

From Being Emma: Living My Best Life With Butterfly Skin by Emma Fogarty 

The morning of the debs, I woke up in agony. Of course I did. This is my life we’re talking about. Nothing ever came easy. Not even a day I had dreamed about for years, not even with the dress and the boy and the hope that maybe, for once, things for me would go okay.

It was my foot. That foot. My weak spot that never failed to give me trouble. I couldn’t walk on it. Just putting weight down made it feel like it would snap.

Mom went straight into panic mode. Half of her was trying to get me to lie down, to rest, to cancel the whole thing.

The other half – the part that knew her daughter – was already hunting for solutions. She called the doctor. He gave me strong painkillers and told me to stay off my foot for the day.

In fairness, they could’ve told me to stick pins in it for all I cared – I was going. Paddy Moran was taking me, he hadn’t forgotten. There was absolutely no way I was missing it.

But I did what I was told and did as little walking or standing as I could until the last minute. I got my hair done.

‘Did you hurt your head, Emma?’ my hairdresser, Anita, asked me as she combed my hair.

‘No,’ I said.

‘You’ve a small cut,’ she said. I knew what that was. I’d been trying styles the day before and the clip had been too tight.

‘Will you get my mom?’ I asked and she ran outside.

A moment later she came back in. ‘Your mom is crying in the car,’ she said, ‘I’m going to give her a minute… she said you’ve had the hardest day.’

‘No,’ I assured her, because I wanted to go so much, ‘I’m grand.’

But I did feel for my mother.

Eventually, I was ready.

When Paddy pulled up outside the house, it really felt to me like I was in a film. He stepped out of his car wearing a suit and holding a corsage that perfectly matched the pattern on my dress. I don’t know if he picked it on purpose or just got lucky, but either way, it felt like fate.

‘I’ve been in London,’ he said.

‘So, are you home for a visit?’ Mom asked him.

‘No,’ he said. ‘I just came home for the debs, I’m off again tomorrow.’

My heart did somersaults.

We took photos in the sitting room and, for one, Paddy leaned across and kissed me on the cheek like it was the most natural thing in the world. I played it cool, but inside? Oh my God, I melted.

[My sister] Catherine squealed when she saw the kiss and whispered something to Mom. Mom laughed and then said something quietly to Paddy.

‘Would you like a kiss too, Catherine?’ he said, and she ran over and lifted her cheek just like I had. That was so cute.

We got into Paddy’s car, which he was going to drive to the school to meet the bus that was taking us all to the debs. He’d leave it in the village overnight.

I was fiddling with the seatbelt when Paddy leaned across and clipped it in for me. I swear to God, I don’t think I breathed the whole journey.

My parents followed behind in their car – to wave off the bus with the other parents – and then we were on our way.

I remember feeling so proud to be with such a gentleman as Paddy was. He was just incredible. He chatted to everyone. He shook hands and said hello.

And every single time someone asked who he was there with, he answered proudly, ‘I’m here with Emma.’

He didn’t say it as an afterthought or a favour. He said it like it was obvious and the most natural thing in the world.

At one point he went to the loo, and [my fried] Catriona came up to me, all low-voiced and serious. ‘I can’t find John,’ she said.

‘What if he goes off with someone else?’ John was her escort for the night.

I realised that Paddy was taking ages and I started to worry about him too. But then we checked, and there the two of them were, standing in a little group, having a smoke. Like it was nothing.

Because it was nothing.

Bullying does that to you. It warps your sense of what’s real. You can’t trust it when people are kind. You start looking for the moment they’ll change their mind about you. You can’t trust someone to be consistent.

That’s what happens when your best friend acts like you’re a total stranger practically overnight. That’s what happens when your whole teenage life has been built on whispers behind your back. You learn not to expect goodness. So when it shows up, you think it must be a trick.

Later, the music started up – Enrique Iglesias, Hero, the song of the moment. Every girl there knew the words. Every girl there had imagined dancing to it with a dream boy under dim lights.

Would you dance, if I asked you to dance…

I remember that moment like it’s still happening. Even writing it now, my heart is speeding up.

Paddy put his napkin down. He stood up and fixed his bow tie. Then he turned to me and said, ‘Emma, would you dance if I asked you to dance?’

I – of course – said, ‘No way.’

But he just grinned. Held out his hand. ‘Go on,’ he said.

‘No.’

‘Ah, go wan.’ He kept going.

‘Go on, Emma. You have to. It’s your debs.’

Eventually, laughing, I admitted defeat and gave in. I stood up, my foot still aching but my heart absolutely thundering. As we walked towards the floor, Paddy leaned in and asked, ‘Can I hold you for it?’

‘Alright,’ I said.

‘Grand,’ he said, and he took my hand and placed the other one gently around my waist.

And we danced with the whole room watching.

For those few minutes, I forgot it all. My pain. The bullying. The girls who turned their backs to me as I’d walked into that hall. I forgot the whispers. I forgot fear.

Everything fell away. It was just me and Paddy, my dream boy on the bus.

One of the best concerts I ever went to was Ed Sheeran. One man and a guitar, filling the stage with total presence. His album ÷ is actually one of my favourites of all time, as in it’s in my top three. Ed’s part-Irish. I love that and I think it makes that connection you don’t get with others.

I remember seeing that he had done a concert in aid of EB for his friend Courteney Cox. Someone really close to Courteney had a child with EB and Ed had played for a fundraiser.

It endeared him to me for sure, but then when = came out, something just clicked. It felt like a spark – like his masterpiece.

I thought, this is it. I’m going to meet him. I just knew. The butterfly on the album cover? I took it as a sign. The idea of meeting him got into my head and I was so motivated. I can’t describe it, it was this will, and I’m never pushy but I really decided to put pressure on everyone, including [my friend] Jimmy, to make it happen. Jimmy really tried. We all did.

The night before his concert, I texted Jimmy, ‘I don’t think it’s going to happen. I’m giving up.’

I couldn’t believe it. I had been so convinced that I would meet my hero. It had felt so obvious to me, of course I would.

But now I was starting to accept that it was way too much to ask of the universe.

About half an hour later, I got a message from someone else: ‘I might have some information. Give me a minute.’

Then another message: ‘I know where he’s having lunch.’ She said where it was. I couldn’t believe it, Osteria Lucio. That place was only five doors down from Debra’s office. I was shaking.

I FaceTimed [my friend] George. ‘George,’ I said, ‘can we change our plans for tomorrow? Can you bring me to Dublin to meet Ed Sheeran, please? Pretty please?’

‘Of course,’ she said.

The next morning in Dublin, George parked in the Debra wheelchair spot. Then George and I, along with Mom, who had decided to come too, sat in the car wondering how to best approach this ambush.

I was terrified Ed was already in there. I kept thinking he would suddenly come out and go, and we’d miss him because I couldn’t get out of the car fast enough.

‘I’ll block him in if that happens,’ George said.

Just then a black van pulled up. Ed Sheeran jumped out and ran inside the restaurant.

‘Oh myyyy GODDDD!’ I shrieked.

‘That’s the man we want,’ George said. ‘Right.’

She turned off the car, got out and got me out, into my wheelchair and on to the footpath.

‘I can’t believe he is in there,’ I just kept repeating that.

Then a woman approached, the one who had texted. We all felt like spies at this stage – I swear it is funny in the retelling, but at the time you’d think we had the outcome of the Cold War on our shoulders.

‘Drive behind the van,’ she said out of the corner of her mouth, ‘and just have Emma on the path there by the door, sitting talking.’

‘It’s a free country,’ George said, getting the gist of the plan. She wheeled me over while Mom turned the car and parked. There we were. We tried not to be too obvious, keeping one eye on the restaurant door.

I sat talking to Mom through the window of the car, as if I had just been going that way and spotted an old friend, but as time passed it got harder to make it look natural.

The driver of the black van kept looking at us over his shoulder. I widened my eyes at George and she held on to the handles of my chair.

‘And how is Malachy?’ she said to my mom, buying us a few more minutes. Next thing, the van driver approached us, but he stopped just before he got to us. Then he spoke out of the corner of his mouth.

‘Open your back window,’ he hissed to Mom. She did, and he quickly headed back to the van, then returned with an armful of merch, which he threw in the window. It was all so quick.

‘You don’t know where those came from,’ he said over his shoulder as he went back to the van.

I was on a high. Everyone was on our side, this was going to happen. Suddenly, Ed was on the street. He looked over and waved.

‘Hi guys,’ he said, and he didn’t just leave like he could have, like he was planning to do before he saw us. Instead, he stopped and came over. ‘Want anything signed?’

‘Hi, I’m Emma,’ I introduced myself, ‘and this is my mom and this is Georgina.’

Ed signed a poster and took selfies with us, including one on his own phone. I remember grabbing his sleeve to hold him. I suddenly decided I wanted to talk about his connection to EB.

‘You did a concert for EB,’ I said, ‘thank you for spreading awareness.’

‘That’s a pleasure,’ he said, ‘it’s a great cause, I was happy to.’

‘I’m going to your show tonight,’ I said.

‘I hope you enjoy it,’ he said and turned to go. But I held on to his arm. I decided to be brazen.

‘I might ask you to do another someday – for Debra.’

He laughed. ‘Definitely,’ he said.

I wanted to set a date right there and then, but I bottled out of pushing him any more. I let go of his sleeve and, with a big wave, Ed Sheeran left in the van.

I wish I’d had more time to talk to him. I would love the chance to tell him how much his music means to me – especially the song Visiting Hours.

So many of his songs feel like they were written for me. They’re bops sure – I can’t believe I just used that word – but they’re also genius. His lyrics are incredible, and they really get inside my soul. I believe every word and I feel every word. His concert that night was amazing, although it was so cold, and we loved every minute.

When he’s back, I’ll be there. If he’d just give me 30 minutes, I have an idea for a fundraiser I’d give anything to pitch to him.

And like I do with most people in the limelight, I’d tell him all about EB. But I would also tell him just how much his music helped me survive.

Thank you, Ed.

Being Emma: Living My Best Life With Butterfly Skin by Emma Fogarty is published by Merrion Press and is out now.