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WITH ONE BREATH

on a journey to end cystic fibrosis

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Ava

Ava is the picture of health, but don’t be fooled, she has fought CF since her very first day. Ava was diagnosed with CF in utero when prenatal ultrasound imaging revealed meconium ileus. Essentially, Ava’s first stool (meconium) was blocking the last part of her small intestine (ileum) because CF made her stool thicker and stickier than normal.


Immediately after birth, Ava underwent abdominal surgery to have the obstructed stool and her appendix removed. During the procedure, a gastrostomy tube (G-tube) was inserted through her abdominal wall to deliver nutrition directly to her stomach during her lengthy recovery.

Once settled at home, first-time parents Kate and Dj learned how to administer medications and perform manual percussion or clapping treatments to keep Ava’s lungs clear. In an effort to learn more ways to help Ava, Kate and Dj attended an annual CF Education Conference put on by the University of MN CF Center.


While listening to others affected by CF speak, Kate unexpectedly broke into tears. The fear of the unknown, the horror of seeing tubes jutting out of Ava’s infinitely small body, the added stress of following an intense treatment regimen each day, and the feelings of shear helplessness cascaded down her cheeks one drop at a time. A nurse at the conference approached Kate and gently said, “You’re going to suffer the first 18 months, and then a light bulb will go off and you’ll get this.”


In the months that followed, Kate and Dj squared their shoulders, embraced hope, and refused to allow CF to define their family’s future. While they were committed to giving Ava the best care, chronic disease would never be an excuse to not live life to the fullest. Ava would receive no leniency or babying, and would never be introduced as a person with CF. Kate and Dj, on the other hand, would not let CF keep them from expanding their family and welcoming beautiful Mia into the world.


In their journey with CF, the Beyer’s know fearless is living in spite of the things that scare you to death.

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