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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 loveLisa 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."
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