Sussex Teen With Inability to Smile Helps Other to Do So – Ray’s Ray of Hope
It’s difficult enough having to navigate the choppy waters of your adolescence, but imagine dealing with the need for acceptance along with a very prominent handicap.
That’s the challenge of one teenager in Sandyston, Sussex County who has a defect which causes him to not be able to smile.
For 15-year-old Austin Halls, being unable to smile and living with a face that’s disfigured isn’t such a big deal. It’s just who he is — and he’s making no apologies.
In fact, he’s proud of it.
“We have smiles in our hearts,” said Austin, who was born with Moebius Syndrome, a rare disorder in which sufferers are born without or undeveloped cranial nerves that help their facial muscles form a smile.
“I’m self-confident. I pretty much wipe off what people have to say about me,” Austin said during an interview with his mother, Beth, at their home in Sandyston in Sussex County.
“You could focus on the negative — why was I born with this? I try to focus on the positive, that’s who I am.”
Vicki McCarrell, president of the Pilot Grove, Mo.-based Moebius Syndrome Foundation, first met Austin in the lobby of a Philadelphia hotel, the site of the foundation’s 2012 biennial convention, and heard someone playing the piano.
Impressed by the sounds, McCarrell went to see who was giving the impromptu performance and, to her surprise, saw Austin pounding the ivories.
“He’s an amazing musician, a great musician. And a neat kid,” said McCarrell, adding that Austin, who also plays bass drum in the marching band at Kittatinny Regional High School, later played guitar at the foundation’s talent show.
Based partially on what he and his mother saw at the convention — many children with Moebius who were extremely shy because of their appearance — Austin is taking steps to try to raise awareness of the syndrome.
In addition to being unable to smile, Moebius often brings with it other medical problems. Like Austin, who cannot fully close his eyes at night, many Moebius patients can move their eyes up and down, but not laterally.
“Many of them (people with Moebius) have had a hard time getting through life. A lot of kids are shy, they’re bullied,” said Austin, who until a few years ago wore his own perpetual frown, the telltale sign of Moebius, before a successful 18-hour “smile surgery” in 2008 gave him the ability to smile on the right side of his face.
A second surgery, in 2009, to allow him to smile on the left side of his face, was unsuccessful. Plans for a third surgery are in the works, his mother said.
“Lots of parents came to the convention with like their kids under their wings, to protect them,” added Beth Halls.
On his Facebook page, Austin has launched a campaign to raise money for the Moebius foundation’s next conference, which is scheduled for July 2014 in Bethesda, Md. By helping to sell various Moebius memorabilia, he hopes to raise $1,000 to $10,000 toward the $135,000 cost of the three-day convention.
He’s also been trying to make a guest appearance, possibly playing the guitar, on his favorite TV show, “The Ellen Show,” hosted by comedian Ellen DeGeneres.
In an effort to get DeGeneres’ attention, Austin has collected more than 1,000 “likes” on his Facebook page. He’s also sent many emails to the show, but has not received any replies.
“I want to be a role model for kids. It’s okay to be who you are and love yourself,” he said.
Those are words every adult should instill in their kids every day.
And words that every teen, even those not afflicted with Austin’s syndrome, need to heed.
Austin Halls – today’s inspirational Ray’s R