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Human Interest

Boy Not Expected to Live a Year Makes Video to Help Mom Pay for His 53rd Surgery

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Doctors thought Austin Niehus, who was born with Goldenhar syndrome, a rare genetic disease that causes facial deformities, wouldn’t live to see his first birthday.

Fourteen years and 52 surgeries later, he’s still around, and he’s put together a five-minute video sharing his story to raise money to help his mother pay for his next procedure.

Niehus, who lives in Craig, Colorado, was born deaf and missing an ear (“God made [me] very unique and special,” he says) so he uses note cards he holds up to the camera to communicate.

“I have to have another surgery in June :-(” he says in one. “They will be repairing my [palate].”

He then points to his mouth.

He wanted to raise $4,000 because “insurance doesn’t cover everything” (it won’t cover the plate to close his palate), so his friend suggested he make a video using note cards, he writes.

“I was nervous to do this well because I was bullied so bad and made fun of a lot!” he admits in the video.

“So to make this video I guess I am being brave!” he writes.

The response has been overwhelming, but, according to a post on his Facebook page, he and his mom haven’t been able to get the messages to thank everyone themselves.

“This is Austin’s Papa,” the post said. “Austin’s mom wanted me to tell you thank you so very much for all your support, kind words and prayers.

“She still has no internet and has to leave the house to find free wifi to view and reply back to your posts, and her data plan on her phone is way over the limit right now,” he wrote Thursday.

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