CLYDE, N.C. (WLOS) — A North Carolina family says it is moving forward with plans to take their 12-year-old son to Boston for a heart procedure, despite an insurance denial that arrived days before their scheduled trip.

Rowan Lowry was diagnosed with Kawasaki disease when he was 7. The disease affected the blood supply to his heart and left him with multiple aortic aneurysms and narrowed arteries. He has already undergone open-heart surgery.

Rowan is scheduled to have a stent procedure at Boston Children’s Hospital on Oct. 19. His mother, Cheryl Presnall, said the family received a denial letter shortly before the trip.

“I got the letter of denial yesterday from our insurance, and they said that the cause of denial was because it is deemed medically unnecessary and experimental,” Presnall said.

She said Rowan’s condition could worsen if the procedure is delayed. If an artery becomes too narrow for a stent, doctors may need to perform another open-heart surgery, she said.

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“Rowan is not a science experiment,” Presnall said.

Miranda Yaver, an assistant professor at the University of Pittsburgh who studies insurance denials, said patients with less typical presentations of a condition can face challenges getting treatment approved.

“Things that maybe are lifesaving are ultimately getting denied because it’s not a textbook presentation of the condition,” Yaver said.

Yaver said navigating the denial and appeal process can take a psychological toll on patients and their families. Rowan’s family said they did not have time to appeal before the scheduled procedure but plans to travel to Boston.

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“We’re getting on the plane,” Presnall said. “Because at the end of the day, we’re going to do whatever we have to do. We’re going to fight.”What to do after an insurance denial

Yaver recommends that people who receive a denial:

Contact their physician’s office.Reach out to their local legislator.If they have employer-provided insurance, contact their human resources department.Seek help from patient advocacy groups.

Rowan’s family is accepting donations.

You can click here for Rowan’s GoFundMe. You can click here for Rowan’s Amazon Wishlist.