Meet the Taylor family from Nashville, TN. Ron, Erin, Levi (9), and Carolina Mae (5) have been navigating the challenges of cystic fibrosis (CF) since Levi’s early infancy. The Taylor family’s encounter with CF began when Levi’s newborn screening test showed positive results for an enzyme associated with the disease. With no family history and a seemingly healthy baby, the news came as a shock. Confirming the diagnosis through a sweat test at just three weeks old, the family faced an uncertain future. However, their fears were eased by the exceptional care team at Vanderbilt Children’s Hospital, who provided support and guidance throughout their CF journey. Subsequently, when Levi’s sister, Carolina Mae, arrived in 2017, her diagnosis was confirmed through a blood test for CF genetic mutations as well.
CF is a progressive disease characterized by thickened mucus that affects multiple aspects of health. To maintain their well-being, Levi and Carolina adhere to a daily routine of nebulized breathing treatments and chest percussions, using a vest to loosen the mucus in their lungs. These treatments, which take 2-4 hours each day, are integrated into their schedules alongside school, sports, and other activities. Additionally, they take numerous pills, including enzymes for digestion, vitamins, and genetic modulator drugs. Regular medical appointments are also a part of their routine. Erin further explains the impact of CF treatments, stating, “It takes a lot of planning, some early mornings and late nights, but Levi and Carolina always do their treatments without complaining.”
Living with CF necessitates being mindful of germs and respiratory infections, as these can have serious consequences for individuals with the disease. While the Taylor family has always been cautious, the arrival of the COVID-19 pandemic posed additional challenges. They had to make difficult choices, isolating themselves and forfeiting activities that were once part of their normal family life.
CF is often misunderstood as solely a lung disease, but the Taylor family highlights the comprehensive impact of CF on various bodily systems, such as the digestive system. They also emphasize that while CF may present challenges, it does not limit Levi and Carolina from participating in various activities or living fulfilling lives. With a relatively small CF community, the family recognizes the importance of raising awareness about the disease. They emphasize that CF is not widely understood, even though more than 10 million Americans unknowingly carry the CF gene. By sharing their story, the Taylor family hopes to shed light on the realities of living with CF and inspire support and empathy for individuals and families affected by the disease.
Levi’s journey with Team IMPACT began when he was matched with Belmont Baseball, signing with the team on National Signing Day in November 2022. Erin stated that “After almost three years of missing out on activities due to COVID, it has been incredible to see him form relationships with his teammates and not only feel like a normal kid again, but feel special. Being part of the team has made him feel not only like a regular kid again but also special. Levi takes immense pride in being a member of the team and ‘shares at every opportunity with anyone who will listen.’ Participating in events such as throwing out the first pitch on his birthday, serving as the bat boy, and engaging in off-field interactions with his teammates has brought immeasurable joy to Levi’s life.”
“Team IMPACT has given us a sense of community with a group of advocates in the players, coaches, families and Team IMPACT staff.”
– Levi’s Mom, Erin
Team IMPACT’s commitment to leadership and mentorship has had a profound impact on Levi’s personal development. The family shares their love for how “Team IMPACT provides leadership and mentorship and helps instill confidence in kids on top of providing special experiences.” Through Levi’s involvement with the team, he has forged lasting friendships and regularly expresses his enthusiasm, proclaiming, “This was the best day ever.” Levi’s newfound confidence has extended beyond the baseball field and into other areas of his life, resulting in academic and personal successes. The opportunities provided by Team IMPACT, including mentorship and special experiences, have empowered Levi to excel in his pursuits, fostering growth and a positive outlook.
While highlighting the impact of Team IMPACT, it is essential to shed light on the broader cystic fibrosis community. Cystic fibrosis is a rare and complex disease, often misunderstood due to its predominantly invisible nature. Individuals with CF may appear perfectly healthy on the outside, contributing to feelings of isolation and misconceptions surrounding the condition. Despite significant progress in scientific advancements and medications, CF remains a challenging disease with over 2,000 genetic mutations. Breakthrough medications and a cure are still needed for every patient with CF. The CF community, characterized by its resilience and unwavering determination, continues to advocate tirelessly until a cure is found for every person affected by this condition.
Levi’s inspiring journey with Team IMPACT demonstrates the profound impact of community, mentorship, and camaraderie on the lives of children living with CF. Through their partnership with Belmont Baseball and the support of Team IMPACT, Levi has experienced transformative moments that have fostered confidence, created lasting friendships, and provided a renewed sense of joy and normalcy. Since joining Team IMPACT, “Levi, who is a shortstop himself, has new confidence in himself and has excelled in baseball and the classroom this year. “The story of Levi and his involvement with Team IMPACT serves as a reminder of the importance of understanding, supporting, and fighting for a cure for every person affected by cystic fibrosis.