His lungs mysteriously closed. How could this have happened?

A high school athlete became seriously ill and needed respiratory support. Years later, she helped uncover the cause of her rare condition.

The 21-year-old gasped as she read the headline: "The 16-year-old girl Who walks and eats tacos on life support. She skimmed the article about a girl who had a mystery illness that destroyed her lungs and now needed a machine to breathe for her." I have to do something," she told herself after the article was finished. She thought she knew what was killing this young girl, because the story could have been hers, six years earlier.

At the time, she was a high school student in the starting lineup for the women's volleyball team, and just days into the new school year, she developed a fever of 103 degrees and a sore throat Her doctor, in Thief River Falls, Minn., thought she had some type of viral infection and predicted that she would feel better after a few days of rest. He was wrong. The fever disappeared but was replaced by the deepest fatigue the girl had ever known. Just getting out of bed left her breathless. Her mother took her to the nearest ER, 25 miles away.

As the nurse checked the young woman's vital signs, she looked alarmed. The patient's oxygen saturation, which would normally be well over 90%, was in the dangerously low 60s. The nurse put an oxygen mask over her nose and mouth and contacted the doctor in charge. A chest X-ray showed that a gray cloud was invading his lungs. Minutes later, she was in an ambulance heading to Sanford Medical Center in Fargo, N.D., the closest hospital with a pediatric intensive care unit.

In Fargo, she started taking several broad-spectrum antibiotics. The doctors there didn't know what bug was causing this pneumonia, but until they did, they thought these antibiotics should protect her. But she continued to get worse, and within days she had to be put on a ventilator.

When even that wasn't enough, doctors at Sanford contacted the Mayo Clinic in Rochester, Minnesota. Eight days after entering the emergency room, the patient's lungs were barely working at all. The next step was an artificial heart and lung machine known colloquially as ECMO – short for Extracorporeal Membrane Oxygenation. This refrigerator-sized device acts like a lung to remove carbon dioxide waste from the blood and replace it with oxygen, then like a heart to recirculate oxygenated blood around the body. The Mayo Clinic ECMO team flew to Fargo with their machine, strapped the young woman to the device, and returned with her to the Mayo Clinic hospital. This machine breathed for her for the next 116 days.

Like the girl in the article, she too had walked while connected to the huge machine. She too had eaten on the machine, but no tacos. The first thing that passed on her lips was a host when she finally felt well enough to walk at least part of the way to the hospital chapel surrounded by a team of doctors, nurses and technicians . They never understood why his lungs gave out. She spent months on the transplant list, waiting for a new heart and lungs to replace those her doctors thought would never recover. But they did. And finally, after seven months in the hospital, she was able to return home.

For a few years after that, she returned to Mayo every six months for checkups. During these visits, she always stopped by the pediatric intensive care unit to see the nurses who had become like a second family to her during her near-death months. During a visit, two years after his own hospital stay, several nurses told him about a child whose illness was remarkably similar to his own.

Hours later, she and her parents met with the child's parents, who told the story of their daughter, just 12, whose lungs had simply stopped working after what looked like a viral illness. . The families compared notes to see if there were any similarities between the two children's lives...