Living With Cystic Fibrosis

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SPRINGFIELD, Mo. – From the outside, cystic fibrosis patients can look like regular, healthy people, but on the inside, their lungs struggle to keep up with daily demand.

The Daugherty family here in the Ozarks works the entire month of may to bring awareness to CF. While most 9-year-olds can hit snooze to the sound of their alarm before school in the morning, Lilly Daugherty has no choice, but to make her wake-up call, which is a breathing treatment, a top priority.

“She gets up and gets ready and then she has to do her treatments before school, and I come every day to do her treatments at school, and then she comes home and after school she does a treatment if she’s sick,” Mom Heather Daugherty said. “Then she comes home and does her treatments before bed.”

Suspicion of Lilly’s Cystic Fibrosis diagnosis came right after she was born, and was confirmed at 6 weeks old. 

“Lilly was born in 2008, and when she was born her stomach was really swollen, and she ended up having emergency surgery and she ended up having blocked bowels,” Daugherty said.

Mercy Pediatrician Dr. Laura Waters says diagnoses are coming even quicker now.

“In the state of Missouri since 2007, there’s been Cystic Fibrosis as part of the newborn screens, and those results are coming back in about two weeks now, so kids are getting diagnosed earlier which is great,” Waters said. “There’s so many strides that have been made, and so much successful research being done in order to help people live longer with this.”

Daugherty says her daughter takes about 35 medicines a day to treat her symptoms.

“They don’t absorb their food properly and so they struggle gaining weight, and so she takes enzymes before eating anything,” she said. “She’s had eight surgeries and I can’t even count how many IV’s and blood draws.” 

And somehow, between all that, Lilly finds time to eat her recommended 4,000 calories a day and spend about 10 hours a week practicing gymnastics.

“Exercise is very important to them, because of their lungs,” Daugherty said. “It’s kind of like doing extra treatments for the three hours while she’s at gymnastics, but also it’s something she loves to do so it’s not work like her treatments are.”

Even her traditional breathing treatments can double as sibling bonding time with big brother Blake. 

“I like when he sits with me,” Lilly Daugherty said.

And while most 9-year-olds might have a little more complaining to do, Lilly clearly isn’t like most other kids.

“Thank you for helping me through all this,” she said to her family.

They just found out that Lilly’s “Make a Wish” has been granted. Lilly and her family will get to see Fuller House in person, and they leave for that trip next week.

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