Just days ahead of the world premiere of the documentary The Slightest Touch, Emma Fogarty and Colin Farrell expressed their excitement and nervousness as they prepare to present their story to audiences in Dublin. The film centers on their experience during the Dublin Marathon, highlighting a deeply personal moment that carried profound significance for both participants.
The documentary, directed by Rachel Fleit, captures how Emma, living with the rare and painful skin condition Epidermolysis Bullosa (EB), marked her 40th birthday—an age doctors told her she would never reach—by joining Colin for the final four kilometers of the marathon, finishing with Colin pushing her wheelchair across the line. Their goal was to raise funds and awareness for Debra Ireland, the charity supporting those affected by EB.
Raising Hope and Funds for a Rare Condition
The marathon event exceeded expectations, rallying public support that helped raise over €1 million for Debra Ireland, far surpassing their initial target of €400,000. This remarkable achievement was recognized by RTÉ’s Liveline listeners, who voted the event as their favorite moment of 2024, a fact that filled both Emma and Colin with pride and gratitude.
That’s one of the best things that’s ever happened to me in my career,
Colin Farrell said, emphasizing the personal significance of the experience.
Joe Duffy’s number one moment of the year — seriously. The film feels like a bit of a tribute to the spirit of our people, as much as to the friendship that Emma and I share. To come home and celebrate and have the world premiere there — there couldn’t be any more right turn of events than how it’s being played out. The story was born of the country, and it should premiere in the country.
Colin Farrell remarked, reflecting on the meaningful choice to debut the film in Ireland.
Lasting Impact of Love and Community Support
More than a year after the marathon, both Emma and Colin remain deeply touched by the warmth and encouragement from the crowd. Emma expressed the unique affection felt that day, describing it as a powerful experience not just for her, but for all the participants.
You never felt love like it,
Emma said, remembering the energy that carried them through the final stretch.
She recalled the surreal moment of crossing the finish line together, overwhelmed by the support and the fulfillment of a goal they had long anticipated.
It was just the most special moment, and definitely a moment I will take to my last breath.
The Documentary’s Premiere and Personal Reflections
The film had its world premiere at the sold-out screening during the Dublin International Film Festival at The Lighthouse, with Emma, Colin, and the filmmakers attending. It offers an intimate portrayal of their friendship, the challenges Emma faces living with EB, and Colin’s reflections on home and family, including his love for his sons Henry and James, the latter diagnosed with Angelman syndrome.
Emma’s life with EB is depicted candidly, showing how the condition has left her reliant on a wheelchair and caused her fingers to fuse together. The film also highlights how music from artists like Taylor Swift, Ed Sheeran, and Coldplay has provided comfort and healing for her.
In an extraordinary gesture, Taylor Swift granted permission for her song “Don’t Blame Me” to be used in the film without charging a fee, after viewing the scene where her music features.
Taylor is someone who would be very in control of all of her stuff,
Colin said.
As Em knows, we sent Taylor over the scene where her music features, and also the whole film. And within 48 hours, we got back a note saying: it’s yours.
Emma, a devoted fan, found this profoundly moving.
Even if she only watched the three minutes, it was amazing to know that she saw me in the bed, she saw the bandages. She saw my hands, and me trying to hold the phone just to sing along to her song. She saw some degree of EB for three minutes — and that is great.
The Strength of a Long-Standing Friendship
Emma and Colin have been friends for 16 years, connecting initially at a charity dinner held for Debra Ireland. Their relationship strengthened gradually through correspondence and shared experiences, particularly after Emma’s amputation following a skin cancer diagnosis in 2019.
We built a foundation over emails at first and it was only two or three over a year at the start, and then it just grew and grew. There were a couple of moments, but the biggest moment for me was when I lost my leg.
Emma explained, highlighting the critical point when their friendship deepened.
Her book Being Emma details how this significant health challenge reshaped her life, and Colin was a crucial source of support during that time.
He was the one who rang me a couple of times, and was like: ‘How’s your head? How are you doing? and talked me through it. There’s such a stigma still about your mental health,
Emma said, emphasizing Colin’s unwavering care and the importance of mental health conversations.
She also reflected on Colin’s generosity with his time despite his personal commitments.
“Colin wasn’t. And the fact that he gave up his time with his children to ring me just to say: ‘How’s your head? How are you doing? Are you all right, I’m just checking in.’”
There was just something about Colin that I thought I can trust him. I can trust him.
Colin treasures their growing bond and admires Emma’s extraordinary resilience.
“Emma has, on paper and in reality, more reason to feel shite than anyone else I’ve ever met.”
Filmmaker Rachel Fleit’s Intimate Perspective
Rachel Fleit, an accomplished documentary maker known for her work on Selma Blair, joined the project early on to tell Emma’s story authentically. Her approach blended empathy with intimacy, aiming to showcase the realities of living with EB while highlighting the marathon’s spirit.
For me, it was so important to give Emma the opportunity to really tell her story and show the world what it’s like to have EB. I think my only real challenge was to make sure that we got all of the footage that we could from the marathon. The Dublin City Marathon organisers gave us so much help and so much support.
To convey the energy of the marathon’s closing stages, Rachel and her cinematographer joined Colin and Emma for the final four kilometers, using compact cameras including some mounted on the wheelchair and runners.
When we worked on the score and the sound mix of the film I tried to recreate the feeling of that last four kilometres, so when you’re in the theatre, or even at home, I hope that you can experience some of that atmosphere.
Unveiling the Reality of Epidermolysis Bullosa
At the start of the documentary, Emma candidly states,
This won’t be easy, but I want you to know that this is my life,
She allows viewers to witness how EB affects her daily, including the painful and regular process of changing bandages, emphasizing the often invisible hardship of the disease.
I think you could explain EB very well. You can throw out all the words about EB in the world. You can say every word about how awful it is, how cruel it is. But seeing them is a totally different thing. When you see them, you go, oh shit. This is real. It was really hard, but I wanted the world, hopefully, to see it and to see how evil this thing is.
Emma has long advocated for better care for those suffering from EB and stresses the vital role of public health nurses in managing her condition and keeping her out of hospital.
They’re the ones that are keeping me out of hospital. They’re the ones who call it that something’s different. They’re vitally important. So the State really needs to step up, because there’s not a huge amount of patients.
With approximately 300 people living with EB in Ireland, Colin supports Emma’s call for improved resources.
“For the amount that it would cost, the relief that 300 of Ireland’s sons and daughters would experience. I go back to something that Emma shared with me, and she’s spoken about publicly as well, the importance of allowing the families, the caregivers, to not be… sometimes mothers and fathers and brothers and sisters are changing bandages. There should be support in place. We have pushed and gotten a certain something, but it wasn’t enough.
We’ll push again, and hopefully the film can begin to move the needle again in the right direction, and we can tackle it anew.
Looking Ahead: Film Release and Continuing Impact
Supported by Screen Ireland, The Slightest Touch had its premiere at the Dublin International Film Festival and is slated for release later this year on HBO and HBO Max, including services available in the UK and Ireland. Meanwhile, Emma’s memoir Being Emma: Living My Best Life with Butterfly Skin has been published by Merrion Press.
This documentary not only preserves a powerful moment in the Dublin Marathon but also shines a spotlight on EB, the strength of human connection, and the determination to transform adversity into hope.
