mom2momdfw

Tarrant County couple live with disorder that prevents smiling

Posted Saturday, Jul. 31, 2010  comments  Print Reprints

Topics: Marriage

Tags:

A

Have more to add? News tip? Tell us

Just about the time Kevin Smant gets close to corralling his squirmy toddler Ethan, the 2-year-old explodes with laughter.

"He's smart, happy and smiles all the time," said Ethan's mother, Lisa. "He smiles for us."

Ethan may be all smiles, but his parents cannot so much as crack a tiny grin. Moebius syndrome, a rare neurological disorder, has robbed Kevin and Lisa Smant of all facial expressions.

They cannot smile, frown or grimace. Their eyes are frozen in a constant stare. They never blink.

About 2,000 cases of the disorder have been identified worldwide, according to the Moebius Syndrome Foundation. This weekend, during the foundation's conference in Colorado, Kevin was to serve on a panel about living with Moebius.

The masklike face that shows no emotion is the most recognized characteristic of Moebius, but it has others that are less obvious. Kevin can see with both eyes, but he can use only one at a time. To read or drive, he must constantly move his head back and forth.

His speech is also affected because he cannot close his mouth, and he has trouble swallowing certain foods. Babies with the syndrome sometimes have difficulty sucking on a bottle. Both of the Smants were born with club feet and have low muscle tone.

Falling in love

Lisa and Kevin found each other against all odds. They believe that they are the only married couple with Moebius in the world.

For much of their lives, they never met or saw pictures of anyone with the same expressionless face.

"I didn't even know if anyone else really existed like me," Lisa said.

Geography and a 14-year age gap kept them apart until 2002.

She was diagnosed with the syndrome soon after her birth in Dallas. Several surgeries corrected her club feet and improved her eyes.

He grew up in Michigan with parents who downplayed his facial paralysis and insisted on treating him like any other kid.

"I don't think my parents even told me what it was called until my late 20s," Kevin said.

Going to school in the early 1970s, he was barraged by teasing.

"People would ask why my eyes were different," Kevin said. "I would just tell them I was born that way."

Lisa ignored the stares and bullying.

"People didn't ask, and I didn't bring it up," she said.

For both, there was the loneliness that comes with being different.

"For a long time, I just preferred not to think about it," Kevin said. "I didn't want to be reminded that I was different."

By the time he headed to Calvin College in Michigan, Kevin had learned to deal with Moebius as best he could. Meanwhile, Lisa was just starting pre-school.

Years went by, and Kevin decided to pursue a doctorate at Notre Dame. Always a history buff, he planned to become a teacher.

One of his first professors was not supportive.

"You look different, and you have this speech thing," Kevin said he was told. "So maybe you should become an archivist so you won't have to be around people."

Kevin resisted.

"I had to support myself so I got a teaching job, and the students responded to me," he said. "I believed I could do it."

Meanwhile Lisa graduated from the University of Texas at Arlington and went on to pursue a master's degree from Texas Woman's University.

They crossed paths in 2002 at a Moebius Syndrome Foundation conference.

But it wasn't until 2004, when they met at a conference in Arlington, that things clicked.

"We met, talked and fell in love," Kevin said.

A year later, they married.

Not that big a deal

A smile speaks across cultures. But what happens to someone who can't smile?

They used to be perceived as dull, boring or disinterested, said Kathleen Rives Bogart, a psychology researcher at Tufts University in Massachusetts. They were also thought to be prone to depression and anxiety because of their difficulties with social interaction.

But that might not be the case.

In a study published in the Cleft Palate-Craniofacial Journal, Bogart and psychologist David Matsumoto found that many people with Moebius are better-adjusted than previously thought. And they learn to compensate for their lack of facial expression in other ways, such as body language.

That has certainly been the case with Kevin and Lisa.

"Lisa can't frown with her face, but I can always tell when she's happy or sad," Kevin said.

For the most part, the couple said they enjoy life and Moebius is not that big a deal.

Lisa, 34, is a librarian at the downtown Fort Worth public library.

Kevin, 48, teaches at Tarrant County College and UT-Arlington.

On the first day of class, Kevin always tells his students about the syndrome and often jokes about his inability to see with both eyes at the same time.

Students quickly see past the syndrome.

"My reaction when I first walked in the room was, what's wrong with him," TCC student Anjelica Hernandez said. "I wasn't sure I was going to like being in his class."

But her concerns soon dissolved.

"His speech has not affected his teaching, you just have to pay attention," she said. "Dr. Smant is my best professor so far."

When Lisa became pregnant two years ago, the couple was concerned about whether the baby would have the syndrome, which is thought to be genetic but has not been proven.

They concluded that it really didn't matter.

"We knew it could be hard growing up," Lisa said. "But if we did have a child with it, what better parents could there be to guide him through life?"

Still, Kevin said he kept a close watch in the delivery room. "As soon as I got a look at him, I knew," he said. "I could see his eyes moving."

Jan Jarvis, 817-390-7664

Looking for comments?

We welcome your comments on this story, but please be civil. Do not use profanity, hate speech, threats, personal abuse or any device to draw undue attention. Our policy requires those wishing to post here to use their real identity.

Our commenting policy | Facebook commenting FAQ | Why Facebook?