One of the most memorable moments of the 2026 A-BE-C Annual Conference in Los Angeles was celebrating Thomas Vincent, recipient of this year’s Courage to Shine Award. The award recognizes individuals who embody resilience, inspire others, and make a meaningful impact within the bladder exstrophy community. Thomas’s journey exemplifies each of those qualities.

As part of accepting the award, Thomas shared his personal story, reflecting on the path that led him from a newborn facing complex surgeries to becoming a research scientist, patient advocate, world traveler, and soon-to-be 30-year-old. His message was one of hope: while bladder exstrophy has shaped his life in profound ways, it has never defined what he could achieve. His story is a powerful reminder that a diagnosis may influence your path, but it does not determine your future.

From Patient to Researcher: A Life Shaped by Bladder Exstrophy

In a few months, I will turn 30 years old. If I were to look through my old journals, self-reflections, and time capsule letters, I am sure that some of my predictions of who a 30-year-old Thomas would be were surprisingly accurate, while others completely missed the mark. Through a combination of serendipitous opportunities, years of hard work, and intentional risk-taking, my journey to 2026 has been shaped in many ways by bladder exstrophy.

Like many others, my bladder exstrophy came as a complete surprise when I was born early on Thanksgiving morning in 1996. I was immediately transferred to Boston Children’s Hospital for a complete primary repair and spent the first month of my life recovering in traction. Hoping to give nature a chance to restore bladder function, some major follow-up procedures, including bladder neck reconstruction, were delayed until I was 10 years old. Unfortunately, I never achieved continence on my own, and four years later a bladder rupture led to an emergency medical flight back to Boston. That experience resulted in additional surgeries, including a bladder augmentation and creation of a Mitrofanoff channel. Looking back, I actually consider myself fortunate. While the journey was not always easy, those procedures ultimately helped me achieve a level of continence and independence that has served me well for the past 15 years.

Growing up, my grandmother often reminded me that “Attitude is Everything.” For me, that meant that while I could not control having exstrophy, I could control how I responded to it. Rather than allowing my condition to define me, I focused my energy on becoming the person I wanted to be. I poured myself into academics, athletics, and community service. Soccer became a major part of my life, and I found confidence through the relationships, experiences, and accomplishments I built outside of the hospital.

At the same time, I worked hard to keep exstrophy separate from the rest of my life. Very few people knew about my condition. I worried that others would see me differently if they knew I had been born with a rare birth defect. In some ways, it felt like I was living a double life. One part of me was the student, athlete, and friend that everyone knew. The other was the patient who attended summer camps for children with bowel and bladder conditions and served on the patient advisory committee at Boston Children’s Hospital.

As I matured, my perspective gradually began to change. Some of my biggest questions were no longer about surgeries or medical procedures. Instead, I wondered how exstrophy would affect relationships, travel, career opportunities, and my ability to build the life I envisioned for myself. Over time, I realized that living with exstrophy had given me a unique perspective rather than simply a unique challenge. It had taught me resilience, problem-solving, adaptability, and empathy for others facing difficult circumstances.

That realization became especially clear while applying to college. Many of my friends struggled to identify a meaningful story to tell in their applications, while I found myself reflecting on experiences that had already shaped my goals and values. Volunteering at Boston Children’s Hospital gave me tremendous clarity about what I wanted to do with my life. I wanted to study biomedical engineering, contribute to medical research, and help improve the lives of patients facing complex health challenges. After graduating from college, I pursued a PhD in bioengineering and now work as a research scientist studying rare diseases.

Throughout this time, I constantly challenged myself to pursue experiences that reminded me that exstrophy did not have to be a limiting factor. I developed a passion for travel and adventure. I worked in Uganda for two months as a biotechnician, studied abroad in Madrid for four months, and backpacked through South America while in school. Last year, my fiancée and I spent five months hiking all 2,200 miles of the Appalachian Trail while living entirely out of our backpacks. Each of these experiences taught me how to plan for unexpected situations, adapt to changing circumstances, carry the supplies I needed, and confidently manage my health in unfamiliar environments.

My path into patient advocacy was never something I carefully planned. In many ways, it found me. What began as an invitation to join the patient advisory committee at Boston Children’s Hospital led to opportunities to speak at conferences, share my experiences with other families, and become more involved with the bladder exstrophy community. Over time, I kept being asked to help in new ways, and I discovered how meaningful it was to support others navigating challenges that I once faced myself.

Today, what once felt like two separate worlds have merged. I embrace exstrophy as part of both my personal and professional life. Through patient advocacy, research, and community involvement, I have met remarkable individuals whose experiences continue to inspire me. I now live in Seattle with my fiancée, Sarah, and our Bernese Mountain Dog, Cali, and I am grateful for the opportunities I have had to build a life that once felt difficult to imagine.

One of my greatest hopes for the future is that the next generation of patients will not have to navigate exstrophy feeling as isolated or uncertain as many of us once did. Every stage of life brings new questions—about school, friendships, relationships, travel, careers, and long-term health. By creating stronger patient communities and making it easier for individuals to learn from those who have walked the path before them, I hope we can help patients feel more confident, more connected, and better prepared for whatever lies ahead.

Looking back, bladder exstrophy has influenced nearly every major chapter of my life. It shaped the care I received, the career I chose, the people I met, and the communities I became part of. While I would never have chosen this journey, it has given me opportunities to grow, connect with others, and help others feel less alone. If there is one lesson I hope to share, it is that a diagnosis may shape your story, but it does not determine what is possible.