Kylie is 13, and so far her life has been about beating back the symptoms that make cystic fibrosis such a challenging disease. It progressively debilitates two organ systems — the lungs and the pancreas — and often leads to the need for a lung transplant.
Kylie, who is from St. Joseph, Missouri, receives most of her care from doctors at Children’s Mercy in Kansas City. But when it came time for her to be put on a transplant list, those doctors sent Kylie to St. Louis.
“We tried to maintain her lung function to put off a transplant until she was at least 16,” says Kylie’s mom, Ramona. “But it just wasn’t working. She was on oxygen 24 hours a day and could barely walk across the living room. It was time.”
Kylie received her new lungs on May 21, 2017, and will have to work the rest of her life to keep them healthy and away from chronic rejection. “But,” Ramona says, “that’s easier than cystic fibrosis treatments.” Plus, Kylie no longer needs a wheelchair or an oxygen tank. Instead of fighting so hard to breathe, she can race her 9-year-old brother and have tickle fights. Homebound for so long, she can now go to school this fall.
After her transplant, one of Kylie’s first requests was to have her hair dyed magenta. So, now she’s just a girl with fun, pink hair, breathing in life.
