Here’s my story.
I am 17 years old, and I have broken over 50 bones in my lifetime.
That sentence usually stops people in their tracks. They picture accidents, recklessness, or extreme sports. But for me, fractures were never a result of risk-taking. They were the result of living in a body with osteogenesis imperfecta, a rare genetic condition that causes bones to break easily.
Some of my earliest memories are tied to hospitals—bright lights, the smell of antiseptic, casts that were bigger than my arms, and learning how to be brave before I fully understood what fear was. While other kids learned independence through scraped knees, I learned it through surgeries, mobility aids, and adapting my environment just to participate in everyday life.
OI shaped my childhood in ways both visible and invisible. I missed school for medical appointments and recovery. I learned how to advocate for myself at a young age—explaining my condition to teachers, peers, and even medical professionals who had never treated someone with OI before. I learned that pain doesn’t always look dramatic, and that strength doesn’t always look physical.
For a long time, people assumed my story was about limitation. What I have learned is that it is actually about resilience, creativity, and voice.
Living with a rare disease taught me that representation matters. Growing up, I rarely saw people who looked like me, moved like me, or lived like me in books, media, or leadership spaces. That absence stayed with me. It pushed me to tell my own story—not for sympathy, but for understanding.
I eventually became an author, writing children’s books centered on disability, inclusion, and difference. My goal was simple but deeply personal: to make sure disabled kids could see themselves as main characters, not side notes. Through these books, I’ve been able to raise awareness about rare diseases and start conversations that extend far beyond my own diagnosis.
My advocacy has also taken me into policy spaces. I have shared my lived experience to help explain why programs like Medicaid are not optional for people with disabilities—they are lifelines. Access to healthcare, mobility equipment, physical therapy, and specialists determines whether someone with a rare disease can attend school, pursue a career, or live independently. These are not abstract policies to me; they shape my daily reality.
Beyond policy and writing, I am deeply committed to service. I’ve co-founded and led clubs dedicated to supporting children in local hospitals, creating moments of joy and connection for kids navigating medical challenges of their own. I know firsthand how isolating illness can be, especially at a young age, and I believe community can be a powerful form of healing.
Today, I don’t define myself by the number of bones I’ve broken—but I don’t hide that number either. It is part of my story. It represents survival, adaptation, and the countless times I chose to keep going even when my body made things harder.
Being part of the rare disease community has taught me that our stories carry weight. When we share them, we educate, we humanize policy, and we remind the world that rarity does not mean insignificance.
I am still writing my story. And I share it in the hope that someone else—especially a young person with a rare condition—might see themselves reflected and feel less alone.#
Latest
5 reactions •
2 comments
