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Life has been a bit hectic lately. My family has many changes coming up, and each one brings its own challenges. I’ve lived in the same town for most of my life, as have my children. But that may soon change. Our family is growing, and we’ll be welcoming another…

My 6-year-old son, Cayden, is no stranger to ear infections. When he was 2, we decided it was time to solve the problem of recurring ear infections once and for all. His otolaryngologist recommended implanting ear tubes. Tubes are pretty common, so I wasn’t overly concerned about the…

At the young age of 16, I gave birth to my now 6-year-old son, Cayden. Like any new parent, I had to learn patience. I was raising a child while I was still a child myself, and it was no easy task. However, I quickly discovered that I would learn…

My 6-year-old son, Cayden, loves to spend time outdoors, especially at the new accessible park in our town. He also likes to blow bubbles, paint rocks, and throw a ball. He basically enjoys everything that most children his age like to do. Cayden has never been able to walk…

A few days ago, my 6-year-old son, Cayden, woke us up with quite a surprise. We were getting everything ready for his biweekly enzyme replacement infusion, the treatment for his infantile-onset Pompe disease. When I woke up Cayden that morning to get him prepared for the day…

Last week was a busy one for our family. In addition to delivering a talk about Pompe disease to my son Cayden’s kindergarten class, we also celebrated his sixth birthday. The week was filled with fun and joy as Cayden was able to celebrate another year of life.

It seems like just the other day when I was sitting in the waiting room at the UCI Health ALS and Neuromuscular Center in Orange, California. I was meeting with a neuromuscular specialist for the first time to receive my diagnosis of late-onset Pompe disease. I will…

My 6-year-old son, Cayden, and I plan to put together a small presentation about his infantile-onset Pompe disease for his kindergarten class later this week, in recognition of Rare Disease Day on Feb. 29. Unfortunately, he’ll have to miss school that day because he’s scheduled to get his…

Philips, a company that manufactures and sells respiratory equipment to a big portion of the United States, recently posted a statement saying it was discontinuing “the sale of hospital ventilation products, certain home ventilation products, portable and stationary oxygen concentrators, and sleep diagnostic products.” This change was a shock…

Have you missed me since October? Did you wonder if something Pompe-related had happened to me? Did I get lost “on the road to Pompe,” or did my engine break down somewhere? Truth be told, I got lost in a bank of fog and didn’t know when it…