Sixteen-year-old Lyla Faverio is the kind of person who makes you feel like you matter.
“Her kindness is often the first thing people notice,” says her mom, Angie. “She holds eye contact and talks easily with just about anyone.”
On any given day, Lyla might be laughing with friends at school, putting in work on the basketball court or crushing a leg-day workout with her dad. She’s a straight-A student, a varsity athlete, a daughter and a friend.
She also has cystic fibrosis (CF), a genetic condition that affects the lungs and other organs. But Lyla has never wanted her diagnosis to be the first thing people see.
For much of her life, she rarely talked about CF. She didn’t want people to feel sorry for her or see her through the lens of her diagnosis. Now, she’s more comfortable sharing her experience, hoping others will see the person behind the condition.
For Lyla, that distinction matters.
“When people meet me and get to know me, I want them to say, ‘This is Lyla, this is her character, oh and she has CF,’” Lyla says. “From the outside I look well. You can’t really tell I’m clinically sick. But there’s no pity party. I don’t let CF take the lead. I am the captain of that ship.”
A diagnosis before birth
CF is an inherited condition that causes mucus to become unusually thick. The mucus can build up in the lungs and affect other organs, including the pancreas, gastrointestinal tract and liver. For people with CF, that can mean recurrent lung infections, difficulty absorbing nutrients and, in some cases, liver problems.
Angie and her husband first learned about CF early in her pregnancy with Lyla. Genetic testing showed that both parents carried the same CF gene mutation, Delta F508. Further testing confirmed their daughter would have CF.
Before Lyla was born, Angie was already talking with doctors and nurses in Charlotte and learning what life with CF could look like.
By 8 months old, Lyla had her first hospital stay for a pulmonary exacerbation. She began using a vest to help clear mucus from her lungs and started inhaled medications. Her family also worked to make sure she ate enough calories to support her growth.
From infancy, treatments and medications became part of Lyla’s daily routine.
Before school, she often woke up two hours early to complete her treatments, eat a high-calorie breakfast and take her medications. Hospital stays lasting two or three weeks became part of the family’s rhythm.
“She has always approached CF as it’s just part of her life and she’s never known any difference,” Angie says. “Most of the time she’s positive, does what she must, and then goes about her day.”
Standing apart
Advances in CF treatment have changed what life with the disease can look like. CFTR modulators, a class of medications that improves the function of the faulty protein responsible for CF, have significantly improved symptoms and quality of life for many people with the condition.
Because Lyla has the Delta F508 mutation, she is eligible for several available modulators. But she is among the small number of patients who cannot tolerate them. Even at reduced doses, the medications cause significant elevations in her liver enzymes, making them unsafe for her.
“Although we have four highly effective medications that could substantially improve her symptoms, she has been unable to take them due to her unique liver sensitivity,” says Dr. Elizabeth Champion, Lyla’s pediatric pulmonologist at Atrium Health Levine Children's Hospital, recognized by U.S. News & World Report as a ‘Best Children’s Hospital’ for pediatric pulmonology.
Her care team has spent years monitoring her liver health, adjusting treatments and working across specialties to understand why she reacts so strongly to the medications. Even after an extensive workup, including a biopsy, they have not found an underlying liver condition that explains the reaction.
It’s one of the reasons her doctors call her a “unicorn.”
But Champion says Lyla’s uniqueness goes beyond her medical history.
“What makes Lyla so extraordinary is that, despite these challenges, she faces each day with unyielding optimism and tremendous courage,” Champion says. “Despite all she has faced in her young life, she approaches each day with her indomitable spirit and unparalleled kindness.”
Life in motion
Lyla’s health requires a lot of work behind the scenes.
Her daily routine includes inhaled antibiotics, airway clearance therapies, vest treatments, nebulizers, enzymes and monthly port flushes. When she gets sick, the regimen becomes even more demanding.
But Lyla doesn’t let her treatment routine keep her from living an active life.
“It takes a village,” she says. “My friends remind me about my pills. My coaches know when I need a break even if I say I’m fine. They don’t treat me differently, but I know they are looking out for me.”
Staying active keeps Lyla grounded. She lifts weights with her dad, runs the greenway in Charlotte during hospital visits and pushes herself on the basketball court.
During a recent hospitalization, a new intravenous antibiotic helped her feel stronger than she had in a long time. For the first time, she ran a mile straight. It was a small milestone with big meaning.
“I go 110% until I can’t,” Lyla says. “I’m grateful for the people who help me keep going.”
A team that knows her
Over the years, Lyla’s care team has grown to include pediatric pulmonology, gastroenterology and hepatology specialists, along with nurses, pharmacists, social workers and CF navigators.
Their communication has been especially important as they have worked together to manage her liver concerns and determine which treatments are safe for her.
But for Lyla and her family, the relationship goes beyond coordinating care.
“They have been fantastic,” Lyla says. “They’re personable and funny. Nurses hug us and help us feel comforted and strong.”
When Lyla was 8, her family moved to Virginia to be closer to relatives. But Levine Children’s remained her medical home.
Every three months, the family makes the drive back to Charlotte for scheduled check-ins. When Lyla needs more intensive treatment, they return to the team that has known her for years.
“We go where we’re comfortable,” Angie says. “The team at Levine Children’s has come to know us over the years and treat us like family.”
For Champion, watching Lyla grow has been one of the most rewarding parts of caring for her.
“It is a tremendous privilege to be part of Lyla’s care,” Champion says. “She is truly an inspiration, and my life is better for having known her. She has a very bright future ahead of her.”
Holding her own
Lyla has spent much of her life learning how to care for herself. Now she’s carrying that responsibility into the next chapter. When she turns 18, she’ll transition from pediatric to adult CF care. Until then, she’s focused on what’s in front of her.
Now a high school junior, Lyla is taking classes in mass communications and considering a career in healthcare communications. She hopes to stay connected to the world she knows so well, but in a way that allows her to care for others while protecting her own health.
Champion has watched Lyla grow through years of hospitalizations, blood draws, procedures, port flushes and long drives between Virginia and Charlotte. But what stands out most isn’t the number of challenges she has faced. It’s the way she continues to show up as herself.
“She doesn’t let a chronic disease define her or get in the way of her goals,” Champion says.
Lyla knows what she has. More importantly, she knows who she is: a basketball player, student, daughter and friend.
She has CF, too. But she’s still the one steering the ship.
Learn more about pediatric pulmonology care at Levine Children’s.
