Target

When Questions Become a Calling

What inspired me to become a patient’s advocate was not a single moment, but a series of moments that unfolded over nearly nine years of searching for answers. In 2017, my son experienced a sudden medical event that changed the trajectory of our family's life. What followed was a diagnostic odyssey that led us through countless appointments, hospitalizations, tests, specialists, and more questions than answers. Along the way, we learned that living with a rare or undiagnosed condition often means becoming an expert in a disease no one fully understands while learning to navigate a healthcare system that isn't always equipped for complex and unanswered cases. Like many rare disease families, we found ourselves living in the space between what was known and what remained unexplained, searching not only for a diagnosis, but for understanding, direction, and hope. Over time, our family's journey expanded as we navigated additional rare and complex medical conditions affecting more than one of our children. Through it all, I learned that advocacy often begins when necessity meets hope. When answers are limited, parents become researchers. When systems are fragmented, caregivers become coordinators. When voices are missing from the conversation, families learn to speak up. What inspired me to advocate was realizing that our story wasn't unique. Behind every diagnosis, or lack of diagnosis, is a family carrying the weight of uncertainty while trying to build a life beyond it. As I connected with other patients, caregivers, and advocates, I discovered that while our diseases were different, our experiences were remarkably similar. We were all searching for understanding, support, and a community that truly understood what it means to navigate the unknown. The most rewarding part of this journey has been helping transform isolation into connection. I've had the privilege of watching families who once felt alone find community, resources, and hope. I've seen parents discover their voices as advocates and patients realize that their stories have the power to create change. Rare disease advocacy has taught me that while one person's story can be powerful, it becomes transformative when it helps others see themselves in it. If there is one thing I've learned, it's that none of us are meant to carry these journeys alone. Thank you , Carrie Borrello cborrello4224@gmail.com