A rare brain tumor called a subependymoma was discovered incidentally after years of unexplained symptoms. This crown was inspired by both the pathology slides of the tumor and my experience undergoing brain surgery to remove it. Layered agates echo the clustered structures seen beneath the microscope, while glass slides reference the diagnostic tools through which patients are observed, studied, and understood. The crown occupies the same space as the tumor and the scar it left behind, transforming a site of diagnosis into a symbol of adaptability and survival. Before surgery, my greatest fear was not the operation itself, but losing the cognitive abilities that shape how I understand and navigate the world. Instead, the experience deepened my appreciation for the fragility and resilience of the mind. What was once a source of uncertainty became a source of perspective. Through rare disease advocacy, I have come to recognize how many patients share journeys marked by delayed answers, invisibility, and perseverance. This piece begins with my story, but it belongs to a larger community. Every rare disease diagnosis represents a life, a journey, and a person worthy of recognition. Everyone touched by rare disease deserves a crown.
Category: 3D Material Art
Rare Disease: Subependymoma, Ehlers-Danlos Syndrome
Birth Year: 1990
