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As someone who is generally healthy and asymptomatic, I often feel like my Gaucher disease is tucked away in the back of my mind. Sometimes it creeps back in, reminding me, “Hey, I’m still here” — like when I get my infusion every other week or when my…

South-central Alaska had been acting grumpy all summer — cold, wet, and uninterested in anything resembling fun. So when I saw sunshine in the extended forecast (aka the weather app briefly stopped crying), I did what any rational Alaskan would do: I panicked, overreacted, and immediately booked a remote wilderness…

There are no vacation days when you’re a mom. If infusions once meant chilling on the couch, taking a nap, or watching my favorite TV show, today they look quite different for me. My baby, for instance, is almost 9 months old, and while we try to explain that…

Last Saturday, my 7-year-old daughter, Violet, and I volunteered with Stream Watch, an award-winning program that takes care of high-use fishing sites on Alaska’s Kenai Peninsula. Stream Watch volunteers pick up litter, collect monofilament from recycling tubes, teach visitors about ethical angling, provide natural history education, and promote bear safety.

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…