Terri’s Journey to Diagnosis
By Aryana Adeline Valle-Portela
Terri’s journey to an OCNDS diagnosis for her son Cody was long and challenging, taking 16 years of persistence and advocacy. From the start, Cody displayed developmental delays and health challenges. He struggled to swallow, a condition so severe that medical professionals were unsure whether he would survive without a feeding tube. Instead of giving up, Terri worked tirelessly to teach him how to swallow. Cody’s milestones came much later than expected—he began crawling at 2.5 years old, walking at 3.5, and talking at age 9 after years of using a communication device and American Sign Language.
Throughout these years, Terri and her family were navigating uncharted territory, searching for answers to Cody’s symptoms while grappling with the daily demands of his care. They underwent three different genetic tests with no clear results, leaving them in a frustrating state of limbo. The uncertainty was emotionally taxing, as they had to address each symptom individually without the guidance of a cohesive diagnosis. Despite setbacks, Terri sought out various therapies to help Cody develop—speech therapy, music therapy, horse therapy, and more—while also adapting his school environment to meet his needs.
When the diagnosis finally came at age 16, it was both a relief and a turning point. The OCNDS diagnosis brought clarity to their journey, enabling Terri to understand the root of Cody’s challenges. However, it also marked the beginning of a new phase—educating doctors and school staff about the condition and advocating for Cody’s needs in a system unfamiliar with OCNDS.
Terri’s experience underscores the resilience required of families navigating rare diagnoses. She reflects on the strength it took to persevere during those 16 years of uncertainty and how the OCNDS community has provided a sense of understanding and connection that was missing for so long.