So rare in fact, there are fewer than 50 known cases in the entire world.
But the teen from Long Island is now thriving, thanks to her doctors and a very risky surgery.
"I couldn't breathe and you took me to the OR and saved my life," she read in a letter to her doctors.
The 8th grader from Brentwood, Long Island had a tumor the size of golf ball growing in her throat, making it harder and harder to eat and to breathe.
"It could have been cancerous thank god it wasn't," she said.
But her trachea or windpipe was nearly closed, it was like breathing through a straw and in January she knew she needed help.
"I felt like I was gonna die," adds Elizabeth.
During a 9 hour operation, doctors at Cohen Children's Medical Center, carefully removed the benign but fast growing tumor and put the trachea back together, while trying to avoid the delicate nerves that go to the vocal cords.
If one of those nerves is damaged it can be difficult to speak. If both are damaged you can paralyze the vocal cords which can make it impossible to breathe.
"If the surgery and the reconstruction didn't work properly, Elizabeth would have needed a permanent breathing tube to help her breathe," said Dr. Lee Smith.
Now four months later, you can see her open airway on the right. And she says it's easier to swallow.
"Ever since Dr. Smith did the surgery, I've been eating well and gaining more weight," she adds.
Her voice is still a little hoarse, her doctors say that should get better. She says she loves to sing.
She'll need follow up every 6 months so they can look with a camera and make sure everything's okay.
