POCATELLO — Having Treacher Collins syndrome is no picnic. Just ask Pocatello teen Garrett Smith, who’s been through several surgeries since he was born and adopted by Brian and Lori Smith.
The 15-year-old with a genetic disorder that altered the development of his facial bones and tissues spent 115 days this summer wearing a halo and drinking his meals through a straw. (Blended enchiladas was one of his favorites.) That was after surgery to move his jaw and open his airway.
Ultimately, he dropped from 114 pounds to just 92 pounds before he got the halo off. Now the ninth-grader at Highland High School is back up to 125 pounds. In all, he’s spent 15 to 18 days in the hospital. And another major surgery to fix his eye sockets looms when he quits growing at age 17 or 18.
These kinds of challenges are highlighted in the movie “Wonder,” now showing at the Pine Ridge 11 theater in Chubbuck, which is about a boy with Treacher Collins syndrome.
Garrett saw the film Nov. 17 with his parents, friends, neighbors, Pocatello Mayor Brian Blad and representatives of the Kind Community organization, which promotes tolerance and kindness.
Lori said she loved the movie and cried a lot. And the theater manager even got the studio to overnight ship a “Wonder” movie poster for Garrett, who hopes to get the actors to sign it.
The film focuses on a character named August Pullman, who is similar to Garrett in his condition and his love of video games. Garrett spent a lot of time especially this summer playing video games when he was wearing the halo after his latest surgery, which ultimately improved his airway.
Garrett said he also enjoyed the movie.
“It was really good,” he said. “Like there are a lot of familiar things that happened to me. I liked how they had different perspectives of different people, like how it would feel if he got bullied.”
Garrett, fortunately, hasn’t personally had any issues with being bullied, as was once was the case for Jackson Bezzant of Idaho Falls, who also has Treacher Collins syndrome.
Garrett has always been part of a close-knit neighborhood, according to Brian.
“He grew up around here; he plays with the kids in the block,” Brian said. “No one is really going to let him be bullied.”
Plus, Lori said they never home-schooled him, as the fictional parents did for August Pullman in “Wonder.” Garrett has been going to public school since kindergarten.
“He’s been in school since day one,” Lori said. “People just know him.”
But it did cause a stir one time in kindergarten when one of his prosthetic ears came off and the younger kids didn’t immediately realize it wasn’t his real ear.
Brian said adults don’t pay much attention to Garrett’s condition. But young people tend to notice him more. Generally not, however, to the point of rudeness. Particularly when Garrett’s now married 22-year-old sister Sydney Donohue was around.
If people did happen to stare too long, she’d put her hand in front of their faces and snap her fingers, she said.
Meanwhile, now that the halo is off, Garrett can eventually start getting outdoors a bit more. He likes sports, but can’t play contact events because of the potential for injury to his face. But he likes to ski.
“He just zips down the hill and doesn’t wait for anyone to catch up,” Sydney said.
On another note, Treacher Collins can also affect hearing. So Garrett has a bone-anchored hearing aid, or BAHA, that’s embedded in his skull and vibrates into his ear. It greatly improved his hearing before he went into kindergarten, and eliminated any need to use sign language, Brian said.
And in the future, the number of people affected by the condition should decline, Brian said. Now, as long as doctors know someone is a carrier, like Garrett, they can take action. They can administer a hormone shot 17 weeks into a woman’s pregnancy to prevent the baby from having any physical issues from the syndrome. But the newborn could still be a carrier.
In any case, Garrett said he hopes the movie and his story help raise awareness of the condition and how people can make a difference.
“Like if they see somebody with Treacher Collins help them out and make sure they don’t get bullied,” he said.



(0) comments
Welcome to the discussion.
Log In