New to the Parish: ‘We didn’t get together because of our condition but because we fell in love’

Gareth Roberts: arrived from Wales, 2010

Before he met Emma, Gareth Roberts’s life in Wales was quite lonely. Comfortable, he says, but lonely. He struggled to make friends and had never had a real romantic relationship. He felt most at ease at home with his parents. When he met people for the first time, Roberts would ask himself: should I let them know about my condition straight away or casually drop it into the conversation?

He never imagined that he would meet and fall in love with an Irish woman who, like him, suffered from Moebius syndrome

“If someone had said to me five or six years ago that I’d be here . . . Not in my wildest dreams did I think I’d actually meet someone to have a relationship with. What makes this a special relationship is because I think we appreciate it more, because things have come together in quite a unique way.”

Within minutes of meeting Roberts and his wife, Emma Donnelly, it becomes clear that the newlyweds are very happy. After they met in 2009, Roberts moved to Dublin to be closer to Donnelly. In June 2015, the couple exchanged vows in Cappoquin, Co Waterford, surrounded by a small group of close friends and family.

The story of how this couple met is far from your average love match. Moebius syndrome is an extremely rare congenital disorder that means they are unable to make facial expressions, blink or move their eyes laterally. About 200 people in the UK and only a handful of Irish people have the condition.

As a child, Donnelly’s parents treated her exactly like her twin sister, who doesn’t suffer from the condition. The family only discovered she had Moebius syndrome when she was 12, even though Emma later discovered through her medical record that doctors were aware of her condition at birth.

Roberts, an only child, was brought up in the town of Wrexham, north Wales, by loving parents who did “their absolute best” to give their son a happy childhood.

“I have found it hard for most of my life to make friends. I’m not one that would pin all that on my condition, but I think people do take for granted facial expressions, and that’s understandable because it’s like breathing: something so natural.

“When you’re talking to someone, you expect to see certain facial expressions, and when you don’t see those indicators – like a frown, or a grimace or whatever – then it’s hard for that person to relate to the other person. I’m not saying that barrier is insurmountable but it’s definitely a hard barrier for people to overcome.”

Met on the internet

The couple first made contact in 2008 through an internet forum set up by the Moebius Research Trust. Roberts had only ever met one person with the condition before and he walked away from that experience feeling a bit "spooked".

“She had the condition a bit more severe than myself, so I found it quite a shock to be honest,” he says. Some people with Moebius have intellectual disabilities while others can suffer from symptoms of autism, he says. “You know no different and then you see someone else with the facial paralysis, so to speak, and it’s a bit unnerving.”

After chatting online with Donnelly for a few months, he arranged to travel to Dublin to meet her. She spent a few days showing him around the city. She was surprised when he called a few weeks later to say he would like to visit again. Like Roberts, she had never been in a relationship before.

“Because I’d had no experience of relationships, I didn’t really know what I was feeling, emotions-wise,” says Roberts. “Was I having an attraction because Emma had the same condition as me, or was it because Emma was a friend?”

After his second trip, he wrote her a letter spelling out his true feelings for her. By September 2009 the couple were “in a relationship”, and in early 2010 he decided to move to Dublin after a job opened up for a fraud analyst in a gaming company.

“I had no real commitments and was still living with my parents. My job in the UK was quite secure, but if our relationship was to progress, at some point someone was going to have to move.”

The couple were nervous about taking such a big step relatively early on in the relationship. “Because it was my first relationship, was I taking too big a step? But on the other hand, was this opportunity ever going to come around again?”

“The phone bills were getting very high,” says Donnelly. “We got together not because of our condition but because we fell in love with each other.”

Roberts had expected Ireland to be quite similar to his home in the UK. "Because we speak the same language, there would be a lot of British shops and British TV, so from my perspective there are a lot of home comforts. But there is a definitely a difference. I know it's a cliche but the people here are so friendly and generous."

Definitely Irish

Now that he has married to an Irish woman, Roberts says he considers Ireland his home.

“Last year on budget day, I was waiting for a bus on Kildare Street and this guy with a microphone comes up to us. I ended up on the BBC World Service talking about the Irish budget, so I thought, I’m definitely Irish now.”

Roberts is fascinated by Irish history and has taken the time to read about the Easter rising ahead of the 2016 centenary celebrations. “The history of Ireland, growing up in the UK, the only thing you’d hear about in the news would be Northern Ireland and the Troubles. I’ve really enjoyed learning about the whole history of Ireland.”

Roberts and Donnelly are now eager to create a greater awareness of Moebius Syndrome. “We want to give hope to the parents of children who have recently been diagnosed with Moebius, that your children can have a happy and fulfilling life.”

• moebiusresearchtrust.org/projects-1
• We would like to hear from people who have moved to Ireland in the past five years. To get involved, email newtotheparish@irishtimes.com