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Madison teen survives rare condition, undergoes double lung transplant

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Josh Burton photo for Amber

MADISON (WKOW) -- Josh Burton's life didn't start out simply. He was adopted from Guatemala at 17 months old by his mom Kelly.

"I knew when I saw his picture that he was the one," said Kelly. "This was the way it was supposed to be and he was put on this earth to be mine."

She's also always known that he's a fighter.

At just 14-years-old, Josh would have to demonstrate that strength, in the fight of his life.

In June of last year, at the height of a global pandemic, Josh started having startling symptoms, out of nowhere.

"He walked down to the lake with friends and could hardly get home and threw himself on the lawn when he got there. He started throwing up and not eating like he normally would," said Kelly. "He kept telling me, 'I feel like I'm having a heart attack."

"I said, I'm dying , I'm dying, I'm dying," recalls Josh.

They went to the hospital and found out it wasn't COVID-19.

"He was admitted for right heart failure," said Kelly

The next day, as doctors at American Family Children's Hospital were running tests, Josh's lungs filled with fluid and his heart stopped.

"They had to do CPR for 15 minutes," recalls Kelly. "The doctor came in and said, 'It's not good. The next few hours will tell us. But he's gonna come back on a ventilator and he's gonna have this big machine and it's circulating his blood."

Josh was diagnosed with pulmonary veno occlusive disease, a rare condition.

"It involves the blood vessels of the lungs. And for some reason, these blood vessels become dysfunctional or stop working the way that they should. He was very sick," said Dr. Samir Sultan, a UW Health Transplant Pulmonologist.

True to character, Josh immediately started fighting.

"When I came back the next day, he was trying to do a post to Instagram, on his phone, and he's ventilated and he's on ECMO," said Kelly. "The doctors were like, 'You're kidding me!' To know how strong he is, that taught me a lot about who he was and a lot about who I was."

His only hope to get off those machines, was a double lung transplant. Within a week, he had the surgery.

Josh spent 61 days in the hospital and soon after he got home, started school virtually.

"He's just plowing through and we'll put this year behind us and it will be a little more normal next year," said Kelly.

It hasn't been an easy road and now Josh will live with a chronic condition and restrictions.

"Sometimes I wish that I had my old life, because it was easier and there wasn't COVID, too, and I could see my friends," said Josh.

But, with continued therapy and appointments, he's recovering well.

"He's done great. He's a great kid, he's got a great family and got great support and I think the team coming together for this patient was quite amazing," said Dr. Sultan.

And now, he'll use this experience to reach others.

"I expect that he'll look for opportunity in life that gives him opportunity to give back," said Kelly.

Amber Noggle

Anchor, 27 News at 5, 6 and 10

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