A fish, a bird, and a flying child reshaped everything Andrew Longenecker thought he knew about love, science, and resilience.
Transcript
I remember the first time I saw Maria. In the middle of the crowded club, her arms lifted and curved through the air, graceful and sure, like wings catching a familiar current. She wasn't dancing. She was flying.
I think it was as early as the first or second date when Maria mentioned, “There's no way this will ever work. You're a fish and I'm a bird.”
You see, Maria is from Mexico. She's gorgeous, hilarious, empathetic, and lives life full and in full color. I am not those things. I'm a nerd. I like structure, calendars, spreadsheets. But even then I knew I might be a fish, but she makes my heart soar.
So we decided we didn't need to choose. We could just be flying fish together. Maria even bought a case of beer from Flying Fish Brewery for our wedding. And for the next five years, we had the time of our lives, surfing the seas and soaring the skies.
When our son Diego arrived, we were over the moon. That first year was picture perfect. He was hitting every milestone, and we couldn't wait for him to take his first steps. We had friends with a daughter the exact same age as Diego, so we invited them over for a play date. I remember sitting around the living room and their daughter pulled herself up to stand next to the couch. I immediately rushed over, hands out, ready to catch her, because that's what I always had to do with Diego.
Our friends gave me a strange look and asked, “What are you doing?”
I said, “Aren't you afraid she's going to fall and hurt herself?”
And they said, “No, she'll be fine.”
And suddenly I couldn't breathe. In that moment, I knew Diego wasn't fine.
What followed was a long journey of doctors, tests, and uncertainty, ending in a call from an unknown number on an unremarkable Thursday afternoon. She introduced herself over the phone as a geneticist working on Diego's case. Her words came through the phone in jagged little bursts like popcorn in a microwave, “Peroxisome biogenesis disorder”, “hospital,” “tomorrow morning”, “don't Google this”.
So of course, immediately after the call, I Googled it, and the results hit like electric shocks. “Every cell in the body”, “no available treatments”, “most patients do not survive beyond the first year of life”.
Sharing the news with Maria was one of the hardest things I've ever had to do. I imagined her reaction, a nightmare of crying and screaming. But when I told her, she just crumpled, a bird with its wings getting sheared right off. It felt kind of like watching one of those time‑lapse videos of a butterfly metamorphosis, but this time in reverse. From a brilliant, bubbly butterfly shriveling into a tiny cocoon.
The great cosmic irony is that we had spent years talking about how different we were. A fish and a bird, opposites, incompatible by design. But in the one place that should guarantee uniqueness, our DNA, we turned out to carry a mutation in the same peroxisomal gene. Out of 3 billion letters of DNA, we share the same microscopic typo. Turns out the fish and the bird had more in common than anyone could have guessed.
And that rebellious Google session not only taught me about Diego's disease, but also introduced me to a word I had never heard before, peroxisome. I learned three important things. One, peroxisomes are kind of like cellular alchemists living inside every cell in your body. And when they fail, cells malfunction, systems collapse, and you get very sick.
Two, peroxisome dysfunction contributes to many diseases, including Alzheimer's, diabetes, infections, cancer, and even aging itself.
And three, peroxisome research is shockingly underfunded, with less than 1% of the funding of similar systems. I couldn't understand it. How could something so important be so ignored?
So I started studying research papers on the peroxisome and cold‑calling scientists. And remember when I said I was a nerd? I really wasn't kidding.
I remember one of my first scientist calls. I nervously opened the Zoom app and saw a disheveled man in a lab coat, notebooks stacked on his desk, and various medical flotsam and jetsam filling the screen in front of me. I skittishly start asking a few questions, stumbling over my words like a high schooler in a college admission interview.
And he stopped me mid-question and asked me with a skeptical look, “So why are you so interested in the peroxisome?”
I said, “Well, my son has a peroxisomal disorder.”
His face immediately dropped and eyes widened. “Wait, there are sick kids because of the peroxisome?” He had never known.
It turns out that much of peroxisome research has been focused on basic science and disconnected from patients entirely. I was shocked, and then sad, and then angry, and then intensely motivated to do something about it, for my son, for other patients with peroxisomal biogenesis disorders, and for the millions of people who might benefit if we truly understood peroxisomes better.
So I launched PBD Project, a nonprofit research accelerator and biotech incubator for the peroxisome. We're incubating and advancing peroxisome science to transform discovery into treatment by connecting scientists, funding bold ideas, and translating foundational research into medicines. With no scientific background, this has been a complete change in my career, but it's been inspired by my son, Diego.
Now, after Diego's diagnosis, Marie and I took it one day at a time, bracing for a steady progression of symptoms, with Diego losing his abilities a little bit more day by day. But Diego has done better than we ever could have imagined, with no disease progression or loss of abilities so far.
Diego is now eight years old, in second grade at our local elementary school, and is, in a word, incredible. He has Maria's empathy, my “never quit” determination, Maria's dancing skills, my obsession with sports, Maria's tenderness, my drive to make the most of the world. He is amazing. He is one of a kind.
It turns out Diego is our flying fish. And he's changed the lives of everyone around him. His doctors, teachers, and physical therapists all rave about his courage and constant smile in the face of adversity. And we have countless stories of Diego positively impacting the lives of those around him.
But perhaps my favorite story is from his school's fall picnic earlier this year. I was standing off to the side watching Diego play with classmates and someone tapped on my shoulder. I turned around and it was the school janitor.
“Excuse me, sir. Are you Diego's dad?” He said, “I've been hoping to meet you. I just wanted to tell you that you have an amazing kid. That little guy just works so hard. He always has a smile on his face and always says hello. His high five at lunch is the best part of my day.”
And that's Diego's impact on our family, on our community, on rare disease, and one day, I believe, on the world.
Diego still can't walk, but damn, can he fly.
Thank you.