In 2024, our family learned that a genetic mutation had been quietly passed down through generations. The news came through a relative who had been tested, and once we understood what it meant, many of us began the process of getting tested ourselves. In September of that year, I received my diagnosis. I was 20 years old, healthy, and in college. On the outside, nothing had changed. But internally, everything felt different. The first few months were overwhelming. It felt like I had suddenly lost control of my future — as if the choices I made no longer carried the same weight because of what might eventually happen to me. It didn’t feel real. How could something so serious exist in a body that felt completely fine? In my family, symptoms typically appear later in life. That reality has been one of the hardest parts — loving people who are further along in the journey and knowing that, one day, that could be me. There is a quiet grief in that. At the same time, I feel incredibly grateful to still be healthy today. Gratitude and fear can exist together. I’ve learned that. Being the only female my age in my family with this diagnosis felt isolating. There weren’t many people who truly understood what it was like to sit in the “in-between” — not sick, but not untouched either. That loneliness was heavy. In 2025, I attended Camp Sunshine, and it changed everything for me. For the first time, I was surrounded by people who understood without explanation. I met others navigating similar diagnoses, similar fears, and similar uncertainty about the future. What had once felt isolating began to feel shared. What had felt overwhelming began to feel manageable. Camp didn’t erase the diagnosis. It didn’t remove the unknowns. But it gave me something I desperately needed: connection, education, and hope. My family built relationships not only with others walking this path, but also with researchers and medical professionals dedicated to making the future better than the present. That connection to community and to progress made the weight feel lighter. This journey is not one I would have chosen. But it has shown me resilience I didn’t know I had. It has taught me that being healthy today is a gift, that community changes everything, and that even in the face of uncertainty, life can still feel full. Awareness matters. Connection matters. And no one should have to navigate a diagnosis alone.
Halley Flory
Gene: TERT
