One Red Deer man is sporting purple in hopes that others suffering from an extremely rare congenital neurological disorder don’t feel alone.
Roger Kreil, 32, has lived with Moebius Syndrome, which affects lateral eye movement and facial expression, since he was born.
People from all over the globe celebrated the fourth annual Moebius Syndrome Awareness Day on Friday, wearing purple T-shirts that say “Smile with your heart.”
“It’s a special day for me,” Kreil said. “I hope to raise awareness because a lot of people don’t know what I have . . . They look at me and want to shun me because they think I’m mentally disabled. But I’m not.”
Kreil also hopes that by raising awareness, he’ll be able to find others like him and share experiences.
He doesn’t know anyone else in Red Deer with Moebius though he has connected through Facebook with one woman in Calgary and another person in Canmore.
“We’re thinking about meeting up for the first time sometime this year,” Kreil said, noting it’s hard because he doesn’t drive.
According to one website, Moebius Syndrome stems from the underdevelopment of the sixth and seventh cranial nerve. As such, many born with the syndrome have facial paralysis and can’t move their eyes from side to side. Often, the upper lip is also retracted due to muscle shrinkage.
Kreil, who has clubbed feet as a result of the syndrome as well, had to travel to Toronto a number of years ago to undergo surgery so he could smile, a movement he proudly shows off whenever he can.
He also works on his speech, which is sometimes a struggle, he said.
It is estimated that there are, on average, two to 20 cases of Moebius Syndrome per one million births.
Other symptoms include crossed eyes, missing fingers or toes, respiratory problems, swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders and weak upper body strength.
Kreil, who grew up in Rimbey with three brothers, said a number of children picked on him when he was small because he “looked different.”
By high school however, he’d made a few good friends and said most people stopped bullying him after he explained about Moebius.
He said he was actually one of the lucky ones as he was diagnosed shortly after his birth. He knows others who were not diagnosed until they were in their 30s.
He wanted to become a chef and started school to study baking after his mother suggested that as a career option but had to drop out after instructors expressed a concern about him burning himself.
“I was unemployed for a year and moved back in with my parents,” he said. “Now I have a job at Little Caesars Pizza . . . So I’m living in Red Deer with a roommate.”
Kreil put up awareness posters in the pizzeria and handed out Moebius awareness T-shirts to his co-workers.
Next year he hopes to hand out buttons as well and dreams of one day organizing a walk to raise money for Moebius research.
Kreil said he’s just a “regular guy” who likes video games and reading about space and science.
Moebius Syndrome is named for Paul Julius Möbius, a German neurologist who described it in 1888.
There is no cure or single treatment and it is still not yet known what causes it.
rfrancoeur@www.reddeeradvocate.com