My youngest sister, Ellie, is 15 years old and was diagnosed with cystic fibrosis when she was born prematurely. I was 4 at the time, so most of my memories are woven with cystic fibrosis and the CF community.
Growing up, I didn’t know anything different. It was the constant chaos of the early morning vest treatments, medications lining the kitchen counters, and driving to doctors’ offices. While my peers grew up worrying about getting to sports practice and when their next sleepover would be, I grew up worrying about Ellie’s health and when she would be home from the hospital.
The biggest challenge I faced growing up with a younger sister with CF is the fear of “what if.” The consistent worries consumed a lot of my time while I had to watch my younger sister get sick. As I got older, I learned more about the disease and the reality of the “what ifs.” What if the test comes back with negative results? What if she doesn’t get better? What if the next infection doesn’t get better? Even when I saw Ellie playing with her friends, going to swim practice — even on those good days, I heard these “what ifs” loud and clear. But as Ellie grew older, more and more treatments became available.
Ellie was in the fifth grade when she tried Trikafta. At that time, it was the latest CFTR modulator. Like other families, we celebrated when she was eligible to take what was considered the “miracle drug.” But it only took a few months for us to see the toll it was taking on her mental health. It was the first time I realized that not everyone can benefit from these breakthrough medications. As I watched my sister struggle with such a serious side effect, those “what ifs” lit a fire under me. And that became the start of my advocacy journey.
My very first advocacy effort was at Teen Advocacy Day in 2020. I was only 12 at the time, and the event was only held online, so I couldn’t entirely grasp what I was doing. When I had another chance to attend Teen Advocacy Day in 2022, I jumped on it. I joined teens from around the country in Washington, D.C. to advocate for people like Ellie. At this event, I truly noticed what my love for advocacy can do, and the passion I had only grew stronger. Then again in 2024, while advocating at my third Teen Advocacy Day, I realized that I could really do this advocacy thing for the rest of my life. Advocating, learning about policies, making a difference — I was drawn to it.
I received recognition for my advocacy efforts — awards, and articles. But it still didn’t bring a cure to Ellie. I continued to remind myself that Ellie is my “why.” Ellie, at 15 years old, is one of the strongest people I know. She has dealt with truly impossible physical pain and struggled with the mental and emotional burden of CF for years. Watching my little sister carry that weight, be in that pain, miss out on her teen years, and not have better treatment options — that is “my why.”
Through Ellie’s various treatments, doctors' appointments, and hospital stays, I was always there if she needed me. I watch Ellie struggle to hold relationships, not because she isn’t able to, but because this disease is so isolating. Other kids her age don’t understand what is happening. I never want my little sister to feel like she is fighting alone.
But I don’t know how to help her feel better or how to control her symptoms. Instead, I can go to Capitol Hill and fight for options for her. I can raise awareness in my hometown, so she doesn’t have to. I can write letters and post on social media to make the world know that cystic fibrosis isn’t cured and that we still have kids fighting for their lives.
I recently served as an intern for Teen Advocacy Day 2026, and I met another family who had a similar experience with medication side effects. It was a connection that I didn’t think I would ever find. To hear their story and to relate our experiences was life changing. Listening to this teen’s story, as well as the rest of the young advocates whom I got to see flourish during the event, was a full circle moment for me.
Researchers, scientists, and doctors are all imperative pieces of the puzzle, but advocates and policymakers are the foundation they build upon.
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