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Local man reaches out to others with rare disorder

BY CATHY DYSON

Tim Smith stood over the grave of a baby girl who had the same unusual condition he has—and wondered why their lives turned out so differently.

“I was supposed to die when I was a kid, but I was spared and she wasn’t,” Smith said. “Why did I deserve to live?”

It was a clarifying moment for the 48-year-old Culpeper County man. He decided to dedicate himself to educating others about Moebius syndrome, an extremely rare neurological disorder.

The syndrome is pronounced “mo-E-be-us,” and Smith and others born with it suffer from facial paralysis. They can’t smile or frown, laugh or grimace, blink or move their eyes from side to side.

Smith’s facial nerves are the only ones affected, but the syndrome also can cause limb deformities such as club feet, along with respiratory problems, speech disorders and visual impairments.

The disorder is one of more than 7,000 rare diseases and is marked by unknowns.

Although it’s considered a genetic disorder, most cases occur only once in a family, and researchers don’t know what causes it, said Vicki McCarrell, president of the Moebius Syndrome Foundation in Pilot Grove, Mo.

There aren’t any statistics on documented cases or how frequently it occurs.

“Moebius syndrome is so rare that we don’t know for sure how many there are,” McCarrell said.

‘ALONE IN THE WORLD’

When Smith was born in 1963, he said he was “automatically labeled as being retarded.” Because of the facial paralysis, he couldn’t suck a bottle and was given weeks to live.

“They had no clue what was wrong with me,” Smith said.

His family feared he would starve to death until a nurse tried spooning minuscule amounts of formula into his mouth. His family picked up the routine, which was almost a full-time process at first, and he progressed.

School officials equated his lack of facial expressions—and speech impediment—with a lack of cognitive abilities, a mistake often made with Moebius sufferers, McCarrell said.

Teachers and principals wanted to put Smith in special education classes, but his parents refused. Until he learned to fight back, he took a lot of abuse for the way he looked and talked.

“Kids wanted the teacher to ask me a question just so they could hear me answer and  they would laugh,” Smith wrote on his Facebook profile. “I can remember a fourth-grade teacher who laughed along with them.”

Years went by without a formal diagnosis, and Smith assumed he was the only one whose face couldn’t show the emotions he felt inside.

When Smith was in his early 40s, a friend noticed that a doctor had written “Moebius syndrome” in his medical file decades earlier. Smith had never heard the diagnosis.

Smith finally had a name for his ailment. He started searching the Internet and found others whose blank expressions matched his.

“I always thought I was alone in the world,” Smith said. “I never met anybody like me before.”

A NEW WORLD TO SMITH

Smith knew he wanted to help others avoid the lifetime of unknowns he experienced. But he didn’t know how he could help, until he stood over the grave of Hannah Devine, who’s buried at Traveler’s Rest Baptist Church in Spotsylvania County.

Hannah was born with numerous health problems in addition to Moebius. She spent the first three months in the hospital and came home with a tracheotomy and a feeding tube.

As she developed into a toddler, Hannah couldn’t communicate in normal ways, but “her eyes were a well of communication,” wrote her mother, Katie Penycate, on Facebook.

“I spent half of my time trying to figure out what drew people to her,” she wrote. “There was a magical aura around her that just made you fall for her the very moment you met her.”

Hannah’s breathing tube came out during the early morning of  June 21, 2007. She died of cardiac arrest, three months shy of her second birthday.

When Smith learned of Hannah’s story and later visited her grave, because it’s near the church he attends,  he was moved profoundly. That’s when he decided to use every social media available to give others a chance a share their stories—and find a place where they wouldn’t feel so alone.

WORLDWIDE CONNECTIONS

Smith has connected with more than 200 families in the United States—and more than 500 worldwide—through Facebook, Myspace  and Twitter. He has more than 2,000 followers on the various pages, and his numbers grow regularly.

While the Moebius Syndrome Foundation provides education, support groups and information about doctors, Smith focuses on helping people connect.

“That’s where he really flourishes, and he does really well with getting connections made, even from country to country,” said Sharon Deveny, a Stafford County woman whose teenager has Moebius.

Smith encourages others with the syndrome to share their stories on his websites so viewers can see the many faces of the syndrome. There are 114 profiles so far.

Smith also worked to create a worldwide Moebius Syndrome Awareness Day, on Jan. 24 of this year and last.

At Culpeper Regional Hospital, he handed out business cards and calendars filled with photos of Moebius sufferers. He spoke with anyone who would listen and encouraged others to do the same.

“I don’t think there are words to describe what he’s doing for the memory of Hannah and everybody else who needs help,” said Penycate, Hannah’s mother. “He’s absolutely amazing, one of a kind.”

Cathy Dyson:   540/374-5425

cdyson@freelancestar.com

LEARN MORE

The Moebius Syndrome Foundation offers networking, newsletters and conferences every other year for families. More information is available at moebiussyndrome.com.

Culpeper County resident Tim Smith maintains several websites where Moebius sufferers can connect with each other. Go to Facebook and type “Moebius syndrome Tim Smith.” Or, go to any search engine and type “Many faces of Moebius syndrome.”

MORE ABOUT SMITH:

BACKGROUND: The youngest of three children, he grew up in Alexandria. Both his parents died of cancer by the time he was 15, and he stayed in the family home with his older siblings. He worked various jobs until he became an exterminator.

FAMILY: Single with no children.

HEALTH: In April 2010, he had a heart attack at age 46 and needed a quadruple bypass. He’s been unemployed since then and is looking for work.

HIS DISORDER: Smith was subject to ridicule because of his condition, and he said the toughness he had to develop helped get him through the years after his parents died.

“I am not sorry I have Moebius syndrome. If I could change it, I wouldn’t,” he said. “Having Moebius syndrome made me a stronger, better and wiser person.”

Permalink: http://news.fredericksburg.com/healthyliving/2012/02/17/local-man-reaches-out-to-others-with-rare-disorder/

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