Finding Light in the Shadow of Cystic Fibrosis: Garrett’s Journey

The Beginning

Three weeks after his birth, a routine Tennessee newborn screening revealed a potentially life-altering diagnosis for young Garrett Ownby: cystic fibrosis (CF), a genetic disorder known for its thick, sticky mucus that can severely affect the respiratory and digestive systems. Initially resistant to the possibility that their son might have CF, Garrett’s parents were cautious about engaging in discussions about a disease they hoped he didn’t have. However, subsequent conversations with a dedicated genetic counselor led to a sweat test confirming the diagnosis.

This revelation began a daunting path for Garrett and his family. In the same conversation that confirmed Garrett’s condition, they were scheduled for their first visit to Erlanger’s specialized CF clinic. The initial fear and heartbreak were palpable, yet these emotions slowly turned into a steely resolve to face the challenges head-on and to arm themselves with all the necessary knowledge to manage CF effectively.

The early days were a blend of frequent hospital visits and intensive learning, all supported by the compassionate staff at Children’s Hospital at Erlanger. They guided Garrett’s family through each step with patience and empathy. The hospital’s support, coupled with the resources from the Cystic Fibrosis Foundation, proved invaluable in helping the family adapt to their new reality without letting CF dominate their lives.

Support

This unexpected journey also inspired unexpected paths. In a spirited conversation, Garrett’s mother playfully suggested her sister could help “find a cure for CF.” Taking the idea seriously, her sister pursued a nursing degree and now works in the very clinic that treats Garrett, bridging the gap between personal experience and professional care, offering a deep understanding and empathetic support to families facing similar challenges.

Now eight years old, Garrett is a vibrant, active child despite the occasional hospitalizations and the ongoing battle with medication side effects. His journey has not been easy, but the community around him—made up of dedicated doctors, nurses, and fellow CF families—has woven a strong net of support, providing medical care and a profound sense of belonging and mutual understanding.

Future

Garrett’s story is more than a medical case; it’s a narrative of overcoming the power of a supportive community and a family’s relentless commitment to support others facing similar battles. By sharing their experience, Garrett’s family hopes to illuminate the path for others, demonstrating that although the journey with CF has its challenges, no one needs to walk it alone. With gratitude, strength, and an unwavering commitment to community engagement, Garrett and his family continue to navigate the complexities of cystic fibrosis, their spirits buoyed by the collective strength and hope of the CF community.

Click here to learn more about Children’s Hospital at Erlanger’s Pulmonary Services.