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After a rare double lung retransplant, teen gets a special visit with Sue the T. rex

Alison Bowen, Chicago Tribune on

Published in Health & Fitness

CHICAGO -- The many months Josh Burton was in the hospital, dinosaurs kept him company.

They were there when his lungs failed, comforting him while he awaited the miracle of new lungs, just as his first dinosaur, a stuffed animal purple Barney, buoyed him as a small child.

And when those lungs also failed and his family faced the impossible, when hospitals told them over and over they would not be able to try to save him, toy dinosaurs kept watch as his body struggled to breathe.

Josh Burton is a soft-spoken, studious 17-year-old from Madison, Wisconsin, who is now on his third set of lungs.

In 2020, he had shortness of breath after helping a neighbor retrieve a runway pet. He told his mom, Kelly Burton, he felt like he was having a heart attack; she thought surely that couldn’t be the case. But they went to the doctor anyway, and soon found out he had a rare case of pulmonary veno-occlusive disease, which can lead to heart failure.

Because of this, he needed a double lung transplant, an intensive procedure that involved finding donor lungs and transferring them into his teenage body. That happened in 2021.

 

But the following year, his mother entered a room to find a team of doctors, an empty chair, a box of Kleenex and the information that her son’s donated lungs were no longer working in his body.

Of this time, Josh remembers, “My mother wouldn’t stop crying.”

Another double lung transplant, called a retransplant when it’s the second time, was his only option. But hospital after hospital said they couldn’t do it.

Resourceful, persistent, with her son’s life at stake, Kelly Burton asked people from all layers of their life to help — former students she knew through her work at the University of Wisconsin-Madison, a cousin who worked at the Mayo Clinic, nurses at their local hospital where they’d initially been admitted.

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