BRIARCLIFF MANOR, N.Y. (CBSNewYork) — A Westchester County woman with a rare genetic disorder says she secured a COVID vaccine appointment, but was turned away.

Her doctors say without the shot, an upcoming surgery could be life threatening, CBS2’s Lisa Rozner reported Wednesday.

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Alena Galan has a rare genetic disease known as MPS VI, which can cause tissues and organs to enlarge.

At the age of 3, doctors told her mom she had five years to live. But the 23-year-old has defied the odds.

As a little girl, she was profiled by CBS2’s Dr. Max Gomez as one of the first Americans to receive an enzyme replacement infusion to fight the disease.

Next month, she’s scheduled for a spinal surgery, which doctors say is needed to prevent irreversible damage. She may not be able to walk.

COVID VACCINE

Doctors advised she get the COVID vaccine before the procedure. Her mom booked her an appointment for the first week in February.

“I registered her telling the truth,” Marcia Galan said.

Marcia said she provided her daughter’s name and birthdate and called to confirm. She also had letters from Alena’s surgeon and her geneticist, Dr. Robert Marion, from Montefiore Medical Center.

“If we’re worried about people with pre-existing medical conditions, she’s basically the poster child,” Marion said. “Her heart is involved, her lungs are involved, her nervous system is involved. Virtually everything that could become infected and problematic in her is at risk.”

But when Alena showed up at the state’s Westchester County Center site with her booking confirmation, she was turned away.

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“They said you don’t qualify because you’re not 65 and above,” Alena said.

CORONAVIRUS PANDEMIC

Her mother said she has called the hotline non stop.

“I’m saying I want to speak to a supervisor. ‘No, we don’t have access,'” said Alena.

So why was Alena initially approved for the appointment? Rozner went to the County Center to find out. She was first referred to an officer directing traffic.

“I don’t know how. I’m doing traffic,” the officer said.

Eventually, she spoke with a coordinator from the state police. He wasn’t familiar with Alena’s situation and could only say Gov. Andrew Cuomo expanded eligibility to those with underlying conditions this past Monday.

“So now going into surgery, I’m not going to be vaccinated. It’s really scary. I mean, I’m going in risking my life,” Alena said.

She has so far only been able to secure an appointment in Binghamton, and it’s not until April — after the surgery.

Alena, who interned with CBS2 in 2019, says she wrote to the governor for help but has not received a reply.

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A governor spokesperson would only say the system should not have allowed her to schedule an appointment at that time.