Finding Hope and Community: Lisa and Aria’s Journey with PRRF

In this heartfelt episode of Through Our Eyes, host Nicole Giudici welcomes Lisa LoVasco and her daughter Aria to share their emotional journey navigating Aria’s diagnosis of a rare retinal disease, FEVR. As a new mom, Lisa recalls the overwhelming flood of unfamiliar information during that first doctor’s visit, wishing for a simple, doctor-backed resource folder to guide families away from the chaos of online searches. Feeling powerless in the face of a condition with no family history, Lisa quickly sought community through PRRF—initially via early connections and Dr. Capone’s guidance—turning involvement into a healing process. For over five years, they’ve embraced events like the Hope for Vision Walk and Family Connection Conference, transforming isolation into tangible action for research and support.

The episode shines with stories of resilience, like Aria’s instant bond with Mia Dobin, another young girl with FEVR, sparked at a conference meet-and-greet that felt like a “dream come true.” Their friendship has blossomed through playdates, shared adventures, and mutual parent support, easing the loneliness of being “the only one” at school or in the neighborhood. Lisa, a Family Advisory Committee member, offers advice for new families: stay hopeful, lean on doctors for facts, and seek community to combat the unknowns. Aria chimes in with walk highlights—donuts, hill races, and glittery hair—while sharing her vibrant life of choir, violin, dance, and upcoming 11th birthday sleepover.