*******************************
Gareth
and Emma, who were born with a very rare condition called Moebius
syndrome, which means they struggle to make facial expressions, blink or
move their eyes laterally. Photograph: Alan Betson
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.”
*******************************
No comments:
Post a Comment