Brave Heart, Bright Spirit, and the Reason We Fight.

Living with CF, Loving Life

Each day, Olivia takes on a routine that most adults would find overwhelming—and she does it with her signature smile. Managing cystic fibrosis means balancing medicine, movement, and mindset. Before every meal and snack, Olivia takes pancreatic enzymes to help her body absorb nutrients. She swallows over a dozen pills a day—enzymes, vitamins, and her CF modulator, Alyftrek. Each morning and evening, she gears up for airway clearance with her vibrating vest and nebulized medications: albuterol to open her airways, hypertonic saline to thin mucus, and Pulmozyme to keep her lungs clear.

In just eight years of life, Olivia has already spent more than 2,800 hours doing treatments—time that could feel heavy, but she fills it with music, laughter, and imagination. Between those treatments, she’s the same bright, creative girl who loves art, recess, and making gifts for other kids in the hospital. Her care plan may be complex, but Olivia lives each day fully, proving that cystic fibrosis may shape her routine, but it doesn’t define her joy.

Every number tells a part of Olivia’s story — the daily dedication, the time invested in every breath, and the care that keeps her thriving.

Finding What Works for Her

Cystic fibrosis treatments aren’t one-size-fits-all, and Olivia’s journey has been a careful balance of trial, learning, and faith. When she first began Trikafta, the life-changing CF modulator that transformed so many lives, her body responded differently. Despite physical improvements, she faced emotional side effects that became too difficult to manage, and our family made the hard decision to stop the medication, a moment we share more deeply in our Navigating Tough Choices blog post. After a year away, we tried again with slow, cautious doses before ultimately deciding to switch to a newer modulator, Alyftrek.

Today, Alyftrek gives Olivia the best of both worlds, improved physical health without the heavy emotional toll. Every step of this journey has reminded us how complex CF care can be, and how important it is to advocate for treatments that help the whole child: mind, body, and spirit.

Embracing Her Differences, Sharing Her Courage

As Olivia grows older, she’s learning to see her cystic fibrosis not as a limitation, but as a way to make a difference. Living with CF means extra treatments, extra pills, and sometimes extra questions from friends—but it’s also given her a heart full of empathy and determination.

Olivia loves being part of everything Team Salty Jeans does. She helps deliver eggs to Children’s Mercy during our annual Salty Jeans Egg Drop, shares her story with families who attend the 65 Roses Field Games, and in 2024, served as the Youth Ambassador for the Xtreme Hike. That experience gave her a deeper love for spreading awareness and showing others what living with CF really looks like—and that joy, kindness, and hope are stronger than any diagnosis.

This year, Olivia is expanding her impact even further through her Gifts of Courage initiative, creating artwork that becomes cards, bookmarks, and small keepsakes for children staying in the hospital. As a Children’s Mercy Junior Champion, she’s turning her creativity into comfort for others, proving that courage isn’t just about fighting CF—it’s about using her story to lift others up.