Ellery’s Story
Ellery’s rare disease journey with Opsoclonus Myoclonus Ataxia Syndrome (OMAS) has been filled with uncertainty, resilience, and unexpected strength. What began with unexplained movements as a toddler quickly became a life-changing neurological diagnosis, bringing challenges we never imagined—motor struggles, developmental regression, and a complex, rare disease with a long, uncertain road of grueling treatments. Through the years of medical treatment, we also found our voice as caregivers, but more importantly as advocates, determined to make OMAS more visible and understood.
One of the most powerful ways we’ve embraced this journey is by writing a children’s book together—Ellery the Brave Celery. It provides a kid-friendly resource to explain OMAS to the broader community with vegetables and fruit as the main characters. This story isn’t just about Ellery’s experience with OMAS, it’s about facing challenges with courage, embracing differences, and showing that bravery comes in many forms. Through this book, we hope to bring awareness to OMAS, spark conversations about rare diseases, and remind children and parents that even in the toughest moments, they are never alone.
If you or someone you love is navigating a rare disease, know this: your story matters. Keep sharing and keep advocating.
Ellery the Brave Celery is available for purchase on Amazon: Click here!
Rare New England connects families like Ellery’s with clinicians, support groups, and other resources to help them navigate life with a rare disease. Please consider donating so we can continue to find and serve those like Ellery.