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Kailee Sidamrong-Phan was a tiny, sickly baby that her parents rushed to Valley Children’s Hospital frequently for breathing troubles first diagnosed as asthma. At age 2 ½, a test to measure the concentration of salt in her sweat showed Kailee likely had cystic fibrosis – something newborn genetic screening had not picked up.

“We were heartbroken and a little confused,” said her dad, Sok Phan. So were her doctors.

She’s a unique and rare case, explained Dr. John Moua, the pediatric pulmonologist who first diagnosed her: “She didn’t fit the regular profile of a cystic fibrosis patient… a blonde, blue-eyed kid that’s very small and malnourished. She’s Asian and she doesn’t have any of the mutations on her genes, yet she has the positive sweat test. That’s Kailee.”

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