Craig teen Austin Niehus will appear on a TLC show this Wednesday
Documentary depicts Austin's meeting with a girl who, like Austin, has Goldenhar's Syndrome
April 17, 2016
Austin Niehus likes to watch films — and he also likes to play basketball, fish and play video games.
"It's normal, average stuff," said Austin, who's 15 for another week or so.
Austin, who lives in Craig, has been diagnosed with Goldenhar Syndrome, a rare congenital condition characterized by problems with facial features and sometimes other parts of the body, as well. Austin was born without a jaw, and he's undergone 54 surgeries to correct facial difficulties. He's scheduled to have jaw surgery in June.
He will appear Wednesday in a series called “Two in a Million” on TLC, after cable network representatives got in touch with him via social media. TLC announced the show is scheduled to air at 10 p.m. Eastern Time and 9 p.m. Central Time.
Locally, the show will air at 8 p.m.
According to a statement from TLC, the documentary series "brings two people together for the first time who share the same rare medical condition, helping them find answers to important questions and share hardships and triumphs." Austin is one of a cluster of people featured in the series.
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Before January, Austin had never met anyone who shared his condition. Then, through TLC, a girl named Elena Schefer, who also has Goldenhar Syndrome, visited him from Washington state.
"We hung out a lot," Austin said in a phone interview from Denver, where he was staying with his mother, Kera Niehus. Austin said he and Elena swam together and talked about a whole range of topics, from their favorite video games to the bullying they'd encountered growing up.
Since the visit, Kera said, the two have visited through Skype and communicated via texts.
The new connection sparked other relationships, as well. Kera described how she got to meet a parent — Elena's mother — who'd experienced some of the same things she has.
"It's nice to have a sounding board, someone who knows exactly what I'm talking about," Kera said. "It's so nice, I can't even put it into words. Our families just kind of joined together."
Kera described Austin's experiences at Hayden High School, where he's a freshman, as affirmative ones.
"Hayden has loved and accepted Austin with open arms," said Kera, who noted that the family moved to Craig about a year ago.
But she and Austin also noted some uncomfortable encounters with strangers. Austin advised people who meet him not to stare, but just to interact with him "in a natural way." He also said he's open to questions — polite ones when people are genuinely curious.
"Austin's opening to explaining to people, 'This is what I have, but (really) I'm just like you," Kera said.
Austin said he enjoys history and geography in school, and he mentioned a long list of things he likes to do outside of school: playing basketball, watching movies, watching television, going fishing and going hiking mark a few of his interests. That "normal, average stuff," as Austin termed it, constitutes a big part of Austin's identity.
And so does finding a friend, miles away — someone who, like Austin, has lived on the inside of experiences that few people may fully understand.
Contact Michael Neary at 970-875-1794 or Contact Michael Neary at 970-875-1794 or mneary@CraigDailyPress.com or follow him on Twitter @CDP_Education.Contact Michael Neary at 970-875-1794 or mneary@CraigDailyPress.com or follow him on Twitter @CDP_Education.