When a child lives through a life-altering medical condition, the whole family learns how heavy ordinary days can feel. Appointments, therapies, fear, exhaustion, and uncertainty can crowd out joy. For our family, Make-A-Wish and Give Kids The World gave us something illness had taken from us for a while: a chance to breathe, smile, and…
“Did you even know that you were looking at a miracle?” That question caught me completely off guard. It came from a gentleman sitting nearby in the waiting room of our chiropractor’s office, and it landed in my ears like a divine interruption. Amid my self-imposed chaos, his words cut straight to my heart. I…
I can still feel the sand under my feet and I can still remember The Day He Ran. Our Beach Miracle. The sun was setting, the breeze was just right, and we were finally on a family vacation, sort of, after what felt like a lifetime in hospitals. H sat on a blanket, watching the…
In the world of Opsoclonus Myoclonus Syndrome (OMS), few names are as respected and recognized as Dr. Michael R. Pranzatelli. His work changed the trajectory of care for children like my son, H. He devoted his life to researching OMS and founded the National Pediatric Myoclonus Center, where he developed what is now referred to…
When my son was diagnosed with Opsoclonus Myoclonus Syndrome (OMS), the world shifted beneath our feet. It was one of those moments that divides life into before and after. Fear came crashing in, and the questions outnumbered the answers. The only phrase that permeated through my life was “Hold On to Hope.” In the middle…