Life of joy -- without smiles

Justin Smith, 18, was born with a paralyzed face and an uncertain future. Now, many operations later, he's about to graduate and head for college.

By TERRI D. REEVES
© St. Petersburg Times
published April 28, 2002

PALM HARBOR -- When Justin Smith graduates from high school in June, he will undoubtedly toss his cap into the air, hug his family and friends, and have his picture taken. But he will not be smiling, even though he has much to smile about.

A member of the National Honor Society, he has a 3.66 grade point average.

He is president of the Palm Harbor University High School marine biology club, an avid outdoorsman, a weight lifter and a two-time recipient of the Disney 2002 Dreamers and Doers Award. He's headed for Auburn University in the fall.

He recently expressed his independence by getting a large tattoo of a deer on his shoulder.

Yes, he would certainly smile -- if only he could.

In all his 18 years of life, neither a smile nor a frown has crossed his face. Justin was born with an extremely rare medical condition called Moebius Syndrome, which causes facial paralysis and other problems.

Justin is missing the sixth, seventh, eighth and 12th cranial nerves.

He cannot move his eyes laterally, raise his eyebrows, close his mouth or cry. Speaking and eating are difficult. His hearing is severely affected, so he wears two hearing aids. Because he cannot move his eyes side to side, when he reads or drives -- "very cautiously," he says -- he moves his head instead of his eyes.

But Justin says the most difficult part of this syndrome is when people stare.

"I would rather they just ask me what happened," he said. "I don't mind explaining about Moebius."

The rarity of the syndrome becomes, in effect, an additional complication of the disorder. Justin and his parents, Ernie and Pat Smith, spend a lot of time and energy explaining Moebius Syndrome to teachers, children, friends, doctors and insurance companies.

His mother searches for the bright side.

"I think his condition makes people curious. They want to know more about him," she said. "People always remember Justin. And because he has had to work 10 times harder for everything he gets, he is very focused and mature for his age."

The challenges of life began the day he was born.

Unable to suckle or swallow, malnutrition and dehydration threatened his life.

At three months, he had to have his crossed eyes surgically sewn into a forward-looking position. At 1, he learned to eat solid foods by moving his jaw with his hands.

When he was 3, test results predicted that he would be a slow learner and probably never read beyond the fifth-grade level.

During elementary and middle school, he was often taunted and teased by children who didn't understand.

Even as a freshman in high school, Justin remembers eating alone in the cafeteria.

Equally painful were the series of surgeries he underwent to improve his articulation.

In the summer of 1999, he had part of his tongue removed. Six weeks later, the doctors broke and realigned his jaw, then removed two ribs and implanted them under his eye sockets.

His mouth was wired shut for eight weeks and he was fed through a feeding port in the side of his mouth.

The following summer, a plastic surgeon removed part of a thigh muscle and implanted it from his jaw to his temples to create a muscular sling. Now, Justin can put his teeth together, but his mouth still cannot close.

There is a "smile surgery" performed by a Canadian doctor for those with the condition; however, the results are far from perfect. Justin is not eager to have that done.

"I'll wait and see," he said. "Right now I don't want any more surgeries. I just want to think about going to college."

Reimbursement from insurance companies has also been severely limited for this rare disorder.

Ernie Smith, a self-employed building contractor, has had to fight constant battles for coverage.

"They said that since a plastic surgeon was involved, it was cosmetic," he said. "This isn't cosmetic. We're not trying to produce a Robert Redford here. We just want to help him eat and speak."

Even though the battles were eventually won, the Smiths estimate their out-of-pocket expenses for speech therapy, doctors' bills and medical costs total at well over $200,000.

It is not known how many people have Moebius, and there is no official registry, said Vicki McCarrell, co-founder of Moebius Syndrome Foundation and mother of a son with the condition. She said more than 30 families with affected members in Florida are on the foundation's mailing list.

"We have at least a thousand on our international mailing list but estimate there may be 2,000 to 3,000 affected worldwide," she said.

There appears to be a genetic link in some cases she said, but researchers really don't know what causes the condition.

"They believe there is a vascular interruption to the fetus between the fourth and seventh week," she said. With Moebius, the incidence of mental retardation reflects that of the general population. There is a slightly increased risk of young children dying prematurely of respiratory illnesses because of low muscle tone.

Besides facial paralysis, some people with Moebius have clubbed feet or missing limbs.

Most adults lead successful, reasonably normal lives.

Justin plans to major in wildlife in college -- the animal kind.

Still, his father jokes, "He wants to live in a sorority."

After studying biology in college, Justin thinks he would like to pursue a career in wildlife management.

His mother tears up when she thinks about his going away to school, a seven-hour drive from home.

"We are thrilled for him and all his successes," she says. "This will certainly be a new era in his life, but it will be hard, probably harder on us than him. We've formed a tighter bond because of the impairment."

Throughout Justin's life, his parents have always stressed hard work and determination.

"We tell his teachers not to give him any grade he doesn't deserve," Smith said. "We don't want people to feel sorry for him."

Gerald Hines, Justin's English teacher, said he is a conscientious student who never complains about the work, unlike many of his students without disabilities.

"I wish I had more like him," he said.

And Corine Coviello, Justin's ecology teacher and sponsor of the marine biology club, said that as club president, Justin has displayed exemplary leadership this year.

"He organized the creation of a butterfly garden for the school," she said. "I admire him so much for standing up in front of a group and being very outward about his problem. He told them: "Just let me know if you can't understand me, and I'll repeat it for you.' He also helps other students when they need it.

"And I will say, I've never heard anyone say anything bad about him," she said.

Justin's social life has improved over the course of his high school career. This year, he is in the enviable position of sitting with a group of girls at lunchtime.

What happened?

"I'm not sure," he says.

But longtime friend Kenny Bernardo, 17, has a theory.

"I think people got to see the real person," he said. "I have no doubt he will thrive at college, maybe even better than high school."

Although he may never be able to smile, it is easy to hear his laugh when he is amused.

"He giggles like a girl," says Ashley, his 15-year-old sister. "I'm proud to say he is my brother."

To learn more

For information on Moebius Syndrome, call Vicki McCarrell at (660) 834-3406 or check the Moebius Syndrome Foundation Web site at www.ciaccess.com/moebius.

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