And today it's all about our good friend, Austin Halls! You may have already seen it--but if not, check it out! Great job, Austin...
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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.
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"Decide that you want it more than you are afraid of it."--Bill Cosby
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