Noah’s journey with cystic fibrosis
Noah was only 1 year old when doctors diagnosed him with cystic fibrosis (CF), a rare genetic disorder that damages the lungs and digestive system.
Now, at 20 years old, Noah has already been hospitalized 13 times.
Seven of those hospital stays happened while he was in school.
Each one could have been a setback. But Noah sees them differently.
“I see struggles as a form of art,” he says. “They’re a way to grow, not something to be ashamed of.”
Deeply rooted in culture
Noah is a third-generation Filipino American. For him, living with CF has always been about more than just his health, it’s been intricately tied to his identity.
“Growing up with CF, I found strength in my cultural heritage as I faced my health challenges,” he says. “My ancestors’ resilience is a big part of who I am, and I see that same strength in my own fight with CF. It’s something I deeply connect with and draw power from.”
Finding resilience in rhythm
While he was recovering from one of his many hospital stays, Noah found comfort and connection in music, especially the kind that reminded him of home.
He often listens to traditional rondalla, an ensemble of Filipino stringed instruments, as well as OPM (Original Pilipino Music), which fuels his interest in reconnecting with his family’s native tongues. “It’s not easy,” he shares, “but I’ve always connected my fight with that linguistic struggle.”
During a hospitalization in the midst of his Fall Semester in October 2024, Noah spent much of his free time playing the recorder—an instrument that, while simple, became deeply meaningful.
“Nurses could hear me through the halls,” he said, smiling. “That recorder became a way to represent who I am.”
More than just entertainment, he shared that the recorder even served as his personal PFT—or PulmonaryFunction Test—with every high note he reached.
Embracing his culture through music helps him stay grounded and has become another way for Noah to express his resilience.
Leaving one community, building another
After spending 17 years receiving treatment at a different hospital, Noah transferred his care to CHOC.
At first, he felt lost, leaving behind a place where everyone knew him.
But then something unexpected happened.
Noah met Chloe Negrete, a child life specialist at CHOC, just as she was founding CF Connect—a virtual support group for teens and young adults with CF. He became one of the first patients to join, helping to shape the program from the very beginning.
“Being one of the first patients to join CF Connect was really powerful,” he says. “It gave me a space to share my story and help others feel like they were enough, no matter where they came from.”
Chloe says, “Noah has been a bright light for the group. It’s been amazing to see his confidence grow over the past few years and watch him make meaningful connections with other CF patients. His positive energy and caring nature make him a joy to be around. I know he will do amazing things in life and continue to be a strong advocate for the CF community and beyond.”
A full-circle moment
Years ago, Noah’s lola, or grandmother, worked as a nurse at CHOC.
“She sacrificed so much,” he says proudly. “To be here now, in the same place she worked, feels like everything has come full circle.”
Noah was especially moved to learn that his lola once cared for patients with cystic fibrosis. “It made me feel less alone. It gave me a deep sense of pride in where I come from.”
That connection deepens his admiration for the nurses and medical staff at CHOC today.
“They don’t just treat you—they take the time to truly know you,” he says. “Whenever I see a nurse or medical staff member here, I think of my lola. Their tireless work reflects the same spirit of sacrifice she showed.”
He’s also deeply grateful for the care he receives.
“At CHOC, they really know each patient,” he says. “When I first arrived, I didn’t know what to expect. But they took the time to learn about me—my background, my needs. They’ve helped me feel seen and supported.”
Through CF Connect, Noah has also built a new community. One that not only supports him, but also allows him to support others.
“CF Connect changed my life,” he says. “It helped me realize my purpose—as an advocate, as someone who can use his story to help others feel understood.”
Looking forward
Today, Noah is taking college classes and working toward his goals. He loves music, Filipino culture, dogs, and spending time with his family.
And he remains committed to using his voice to inspire others with CF.
“I know what it’s like to be hospitalized and miss out on school and life,” he says. “You have to dig deep, be honest with your care team, and live intentionally.”
His advice for others?
“Prioritize your health. It keeps you alive and gives you the freedom to breathe.”
And above all?
“Keep fighting—and represent yourself proudly.”
