"I am scared out of my mind," Kera Niehus says on her son's Facebook page

By Nicole Weisensee Egan
Updated April 10, 2015 05:55 PM
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The mother of a 14-year-old boy who made a touching video to help his mom pay for his 53rd surgery is beyond grateful for the outpouring of support for her son Austin, she tells PEOPLE exclusively.

“This has been way, way astounding,” says Kera Niehus, 35, “more than I can comprehend as a normal person. Last year I only made $13,000, and the kids and I survived on that.”

She posted a heartfelt thank-you to supporters on Austin’s Facebook page Thursday night.

Unfortunately, the GoFundMe campaign, even though it is strictly for Austin’s medical expenses, may jeopardize his health insurance coverage.

“We may need to pause or stop the gofundme account,” she wrote on Austin’s page. “Austin is on SSI which is his disability stuff and gets Medicaid through them, with all of your awesome, generous donations, unfortunately he could [lose] these benefits, and that means everything comes out of pocket which could be a huge bummer.”

She has an attorney (though she does not know how she will pay for her services) and is hoping some sort of special needs trust fund can be set up for her son – but is not sure even that would work.

“I am scared out of my mind,” she wrote. “I hope that I am not being a Debbie downer right now I just want all of you to be aware of what’s happening.”

Austin, of Craig, Colorado, was born with Goldenhar Syndrome, a rare genetic disease that causes facial deformities.

He made the video to help his mother pay for her share of his 53rd surgery in June. The campaign has raised more than $280,000 in just one week.

Austin can’t get private health insurance because he has a pre-existing condition, she says, and without health insurance, one of his surgeries would easily wipe out the entire amount in the GoFundMe account, Niehus says.

She cobbles together jobs as a hairdresser out of her home, a temp and a house cleaner to support the family – none of which have benefits.

“I wish I could nail it down and work at a specific place,” she says, “but it’s just too complicated because if Austin isn’t having surgery in the summer, he’s having surgery over school breaks, and so I have to be really flexible.”

Marc Williams, a spokesman for Colorado’s Department of Health Care Policy and Financing, which oversees Medicaid, told PEOPLE he could not discuss Austin’s case without written permission from his mother.

He said someone’s eligibility for SSI is determined by the Social Security Administration, not his department.

“Social Security determines someone’s eligibility status under SSI and if they are granted it, they are automatically granted eligibility for Medicaid,” he said.

“If the feds determines someone is not eligible for SSI then they lose the automatic eligibility for Medicaid and have to reapply for it with the state,” he explained.

Nicole Tiggeman, a spokeswoman for the Social Security Administration, would not address Austin’s case specifically but did address the issue in general.

“The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources,” she said in an email. “The law requires Social Security to consider the income and resources of the individual, parents or spouses when deciding an SSI recipient s initial and continuing eligibility to SSI benefits.”

“If his or her income or resources exceeds the eligibility limits the SSI benefit is not payable,” she wrote. “For 2015, the resource limit for an individual is $2,000.”

Niehus was on the verge of shutting down the site when she got an email from a 13-year-old girl who was thinking about killing herself before a friend sent her Austin’s video.

“She’d been having a really rough week,” Niehus says the girl told her. “She watched the video, dumped the pills and right away told her parents. They donated $500.”

“So he saved a girl from committing suicide,” she says. “I still get goosebumps thinking about it.”

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