There’s something uniquely painful about being told a hundred different things, only to be left holding nothing solid. H’s journey has been filled with more questions than answers—and more misdiagnoses than I care to count. This is a small snippet of what it took to finally land on something we could name. But even more… Continue reading The Long Road to a Name
Tag: rare diagnosis
When Your Child Is a Medical Zebra… or an Okapi
When Your Child Is a Medical Zebra… or an Okapi As I continue sharing our journey with Opsoclonus Myoclonus Syndrome (OMS), I wanted to highlight a valuable resource that may help bring clarity to those who have never heard of this rare condition—or can’t quite grasp how it manifests. Especially When Your Child Is a… Continue reading When Your Child Is a Medical Zebra… or an Okapi