Meredith’s Story

Like many others with this condition, she was initially diagnosed with cerebral palsy. It was not until she underwent a full-panel genome sequencing test in her mid-teenage years that doctors discovered she had the mosaic form of the ADCY5 gene mutation. Prior to her diagnosis, she underwent numerous medication trials and inpatient treatments, yet nothing seemed to work. Meredith credits what helped her most to a combination of her own resilience and tenacity, a humanistic approach from psychotherapy, exposure response prevention therapy (commonly used to treat OCD), psychiatric medication, caffeine pills, assistive technology, and the continued practice of mindfulness.

In her early years, Meredith required an extensive IEP and participated in many different therapies, including physical therapy, art therapy, hippotherapy, speech and occupational therapy as well as math and reading comprehension interventions. She greatly benefited from one-on-one paraeducators until her sophomore year of high school, when she began meeting more developmental milestones. This progress allowed her to navigate school more independently and begin practicing the art of self-advocacy. She also lives with several learning differences, including dyslexia, ADHD, dysgraphia, and dyscalculia, just to name a few.

Meredith was delayed in many developmental milestones, yet she persevered and ultimately met nearly every milestone doctors once believed she would not reach. As she grew older, the aftermath of the medical trauma she endured required significant psychiatric support as she worked to understand and process her medical journey.

Today, Meredith Holds a Bachelors of Arts in fine and studio art with a minor in psychology and is pursuing disability policy reform. She is deeply passionate about helping shape a more equitable future in the United States for people with disabilities.

She currently lives fully independently and manages her day-to-day needs and activities of daily living on her own. Meredith brings moxie, positivity, creativity, and determination to nearly every interaction.