Over the past year, our 7-year-old daughter, Violet, had 52 infusions and more than 22 additional medical appointments for her Gaucher disease. Because we live in rural Alaska, where there is no home healthcare, the infusions take place at our local hospital. For all other appointments, we travel —…
“I am a miracle,” an 8-year-old boy stated matter-of-factly. “We are all miracles. None of us was supposed to have survived this.” He showed me a chapter written about him in a book about Gaucher disease and read the first page aloud. He was an excellent reader. I glanced…
When most people imagine being diagnosed with a disease, they picture a cold, sterile doctor’s office and a somber physician delivering bad news. But my story didn’t start like that. I was a healthy kid with no red flags, no strange symptoms, and no reason to think I might have…
The path to a diagnosis can be long and winding — especially when the condition is rare. Often, it takes years to solve the puzzle. Fortunately, I love a good puzzle. Our daughter, Violet, was a beautiful, seemingly healthy baby. But within a few months, we noticed signs that something…
