Lizzy Metz spends the equivalent of 41 days out of each year breathing in medications and wearing a percussion vest to loosen the thick mucus that clogs her lungs.
She swallows nearly 11,000 pills a year, gives countless vials of her own blood up for analysis and misses out on events with her friends.
She's also a bright 8-year-old with a sunny outlook on life and a penchant for dancing.
Lizzy, of Fulton, was diagnosed with cystic fibrosis two weeks after birth. Today, she considers cystic fibrosis to be part of what makes her Lizzy, she told the Fulton Rotary Club on Wednesday. Lizzy and her mother, Megan Metz, spoke to Rotary about her life with the condition.
"She's never known a life of not having it," Megan said.
Cystic fibrosis is a progressive genetic disorder that causes Lizzy's lungs to produce sticky mucus, hurting her ability to breathe and providing a breeding ground for infection-causing bacteria. It also affects Lizzy's digestive system; she spent months hospitalized with bowel obstructions as a baby.
Keeping Lizzy healthy involves daily treatments and frequent doctor visits with the University of Missouri Women and Children's Hospital's cystic fibrosis team.
"I have a lot of work," Lizzy said.
Lizzy spends between one and a half and four hours of each day undergoing treatments, usually with her mother or another family member to keep her company.
"I think cystic fibrosis can be such a thief of time — it takes away time you'll never get back," Megan said.
In addition to the treatments mentioned above, her family works hard to prevent Lizzy from catching respiratory infections — even a minor cold could prove dangerous for someone with CF.
"We're big on minimizing germs," Megan said.
With a deadly pandemic sweeping the globe, the family's precautions grew even more stringent in 2020. Lizzy hasn't gotten to see her friends in person (though she regularly hops on FaceTime with them) or eat out in a restaurant since February. She hasn't been able to practice with her dance team, either, instead taking one-on-one lessons with safety measures in place.
Maintaining physical activity is important for people with CF, and Lizzy loves to dance.
"We want to do whatever we can to make her little heart healthy," her mother added.
The Metz family opted for homeschooling this year to further minimize potential exposure to COVID-19.
"I get to be homeschooled with my grandma," Lizzy said.
The silver lining on a difficult year: All those precautions have worked.
"Because of being homeschooled this year, it's the healthiest she's ever been," Megan said. "One thing Lizzy likes to do is look on bright side. We're fortunate she has such a positive, upbeat attitude."
After spending so much time in the medical system, Lizzy's learned to advocate for herself and her own health needs. For example, when she goes in to get her blood drawn, she'll tell the phlebotomist: "Just do it without telling me."
She and her family have also worked to raise money to fund research into cystic fibrosis treatments and — someday — a cure. The fundraising team "Lizzy's Lifesavers" has donated more than $100,000 to the Cystic Fibrosis Foundation over the last six years, Megan said.
All that hard work recently paid off in a big way.
CF has genetic causes, but there are a number of different mutations each person with CF may or may not have. Depending on the mutations, only certain drugs work for certain CF patients. Though none are cures, some can make the condition much more manageable.
"In the past, Lizzy hasn't been eligible for some of these new drugs for cystic fibrosis Her genetic makeup hasn't qualified for them," Megan said. "We got a call right before Christmas, and because of the CF Foundation's research, she's now been approved for a new medication — she gets to start actually hopefully next week."
Megan described her tears of joy after the phone call in a public Facebook post.
"I think I'm still in shock," she wrote Dec. 22. "I have smiled, cried, have a weird feeling in my stomach, and just so incredibly grateful and happy for the opportunity to try this. Given the fact we had no idea this was a possibility, it's really taken me a bit to wrap my mind around the magnitude of this news."
Symdeco, the new drug, targets an underlying cause of cystic fibrosis. Lizzy's also on the list to try Trifakta, which other parents have described to Megan as a "miracle drug." In clinical trial, people with copies of the mutation Trifakta acts upon experienced a 10-14 percent improvement in lung function while using the drug.
"These are not cures," Megan wrote. "There is still work to be done, but this is big. This is a win for this warrior."
Megan, who works for Fulton Public Schools as a reading specialist, thanked the Callaway County community for its support of her family over the years.
"Since she was diagnosed, they've wrapped their arms around our little girl," Megan said.