Saturday, December 8, 2018

For couple with Moebius syndrome, love Is expressed from the heart

Alex Barker wasn’t expecting Erin Smith to smile when they met in 2015 after almost two years of getting to know each other online. He knew he wouldn’t either. Not because he wasn’t sure he would find her wonderful, but because, like her, he can’t.

Mr. Barker, 46, and Ms. Smith, 39, were born with Moebius syndrome, a rare neurological disorder that causes facial paralysis and affects fewer than 20 in a million people.

They had met only a handful of others with the disorder until Tim Smith, a man with Moebius from Remington, Va., created a Facebook community for the afflicted in 2013. But after a few Facebook Messenger exchanges neither Mr. Barker nor Ms. Smith (no relation to Tim Smith) doubted their compatibility went deeper than their condition….

Ms. Smith, who worked as a medical assistant at Wake Forest Baptist Health’s urgent care facility in Clemmons, N.C., wasn’t used to making close friends outside Linwood, where she has lived on her family’s 300-acre soybean, corn and hay farm since birth. Small-town living suited her: People with Moebius attract strangers’ attention with their expressionless faces and impaired speech — another side effect of the damage to facial nerves — and there are few strangers in Linwood, a town of about 5,000.

“Obviously, growing up was sometimes difficult,” she said. In addition to her facial paralysis, Ms. Smith was born with a club foot. (Limb abnormalities are common among people with the syndrome.) “But I wasn’t really picked on at school because we all grew up together and everybody knew me and my background,” she said. The closeness of the community helped steer her past the feelings of alienation and loneliness that often set in early for children with Moebius. Her temperament helped, too.

“Going through school, I never saw Erin come home completely upset or terrified. She didn’t get bullied much mainly because of her personality,” said Ms. Smith’s father, Bobby Smith. “She’s always been a cheerful, happy person. You can tell when she’s smiling even if it’s not on her face.”

Those closest to Ms. Smith say they can see the smile in her eyes. Both she and Mr. Barker also communicate their feelings verbally, and with affectionate hugs.

Mr. Barker, an advice and information officer at AbilityNet, a British nonprofit organization that helps people with disabilities use technology, also sensed Ms. Smith’s constant if concealed smile. After a few Skype sessions, he thought he might like to see it for himself, in person.

During a 2015 video chat, he told her he had a week of vacation coming up that November and no plans. “She said, ‘Why don’t you come and see me?’” he said. “I was like, that sounds quite good. I was thinking, if Erin and her family are the worst people ever, it’s still a week in the States. I can still go and buy American things, so it’ll be O.K.”

When Mr. Barker landed in North Carolina, the Smiths — Bobby and Erin’s mother, Luann — did not make him want to flee for the nearest Walmart. “As soon as I met her family I felt at home,” he said. “They’re so warm and welcoming. And the second I met Erin I knew she was the girl for me. In my heart I was hoping that something would happen, but I didn’t know if it would.”

It did. Mr. Barker’s 2015 vacation, filled with local wine tastings and visits to the nearby Blowing Rock mountains, included a first kiss, and then a series of them. Mr. Smith had never seen his daughter so happy. And he had never seen her so unhappy about the prospect of waiting seven months for a reunion. The National Moebius Syndrome Foundation Conference in California, where the couple planned to meet next, wasn’t until July 2016. So before Mr. Barker flew back to England, Mr. Smith pulled him aside.

“He said, ‘Son, I want you to come back,’” Mr. Barker said. “And I was like, what? Then he said he would pay for me to come back and surprise Erin for Valentine’s Day.” Mr. Barker didn’t hesitate. He said yes to the offer.

Ms. Smith chokes up when explaining why Valentine’s Day 2016 was among the best days of her life. “We realized that week Alex came to visit that we were connected, and that this was meant to be,” she said. “When I found out my father offered to bring him back out here for Valentine’s Day, it was obvious my mom and dad knew as well.”

A party the Smiths arranged for more than 100 guests at the Wine Sellars Wine Shop and Bistro, in Lexington, N.C., on Feb. 13, 2016, was ostensibly to raise money to help send Ms. Smith to the Moebius conference in July. But “about two hours into the fund-raiser, my dad decided to make a speech to thank everyone for coming out to support me,” Ms. Smith said. “Then he said, ‘Me and mom wanted to do something special for you, too.’” Courtney Mason, Ms. Smith’s best friend since childhood, captured what happened next on video: Mr. Barker wanders into the crowded restaurant, and Ms. Smith lets out a shriek. She runs down the hall and throws her arms around him as party guests, many who have known Ms. Smith since birth, hoot their approval…

“I never set out to fall in love with someone who has the same condition,” he said. Like Ms. Smith, he had dated people without the syndrome. He was once engaged, briefly. “But actually I think it makes things so much easier,” he said. “If there’s one real connection between people with Moebius, it’s the experience of being stared at. It can cause you to feel really isolated, because having a smile is so important. If you don’t, people think you’re unfriendly. Sometimes it’s quite hard to meet people, because you become so self-aware about how you look as opposed to how everyone else looks.”

With Ms. Smith, he added, “we’ve got this shared bond, even though Erin is quite a bit less affected by the syndrome than me,” he said. Mr. Barker has two club feet, which affects his gait but doesn’t slow him down. And “I don’t have all my fingers and toes, so I find doing everyday things a bit more frustrating than she does.”…

In July 2016, Mr. Barker and Ms. Smith reunited, as planned, for the Moebius Conference in Long Beach, Calif. Before the conference started, they met for some sightseeing. On July 10, after taking in a baseball game, they sauntered around the Santa Monica Pier. Mr. Barker seemed nervous. Ms. Smith couldn’t figure out why. “He wasn’t acting right. I was like, ‘Is something bothering you? What’s wrong, honey?’” Ms. Smith said.

He was on a slatted boardwalk with a diamond engagement ring in his pocket — a family heirloom given to him by his godmother in England — and he wasn’t sure how the proposal would unfold, or if he would drop the ring between the wooden planks when he got down on one knee.

“I’ve played the moment back again and again and again in my head,” Mr. Barker said. “I said, ‘Erin, will you be my wife?’ And there was this moment of stunned silence. I was worried she was going to say no.” Instead, she said, “Of course I will.”

“I was shocked,” Ms. Smith said. But the shock gave way to love and gratitude. “It was an amazing moment. I called my parents right afterward. Some of my friends had said, he’s going to propose in California.” Even so, “I still couldn’t believe it.”…

On Nov. 10, Mr. Barker and Ms. Smith were married at the Smith family’s church, Second Presbyterian in Lexington, N.C., by the Rev. Brian K. Rummage, the pastor. Ms. Smith, in a white cap-sleeve ball gown with a lace train and her long brown hair piled beneath a rhinestone clip, walked down the aisle with her father. About 200 guests lined the pews and watched, smiling for her, as she carried a bouquet of roses and lilies in vivid autumn shades of red, gold and orange. Mr. Barker wore a bow tie in Ms. Smith’s favorite color, purple — also the color associated with Moebius syndrome awareness — and a charcoal suit from Marks & Spencer in London.

Courtesy of a colleague

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