“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…
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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…
Recent Posts
- Finding my own ‘happily ever after’ in a life with Gaucher disease
- While I was worried about the effects of Gaucher, life happened anyway
- 30-year Gaucher disease diagnosis delay leaves lasting bone damage
- Another year around the sun with Gaucher, and I am still here
- Recognizing the role nutrition and exercise play alongside treatment