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Awhile back, I donated my 4-year-old son Cayden’s used adaptive equipment. He’d outgrown his old stander, so we no longer had any use for it. While I was sad to see these things go — because it’s a reminder that he is getting older and bigger — I was…

Growing up, I was mostly a healthy, overweight kid who seldom got sick. As an adult, I’ve had a career in the office equipment industry for over 30 years and have always had health insurance through my employers. No matter what type of plan was offered, I’d always pick the…

One of the first things people notice about my 4-year-old son, Cayden, is his lusciously long locks of hair. While some people love it, others aren’t so ecstatic that he’s a boy with long hair. I personally don’t believe that long hair is for a specific gender, but not everyone…

For 25 years, my vacations had always revolved around visiting family. My wife and I would pack up the minivan and take our four boys to Southern California to visit Grandma. We did all the fun things, such as visit amusement parks and the beach. But the thought of traveling…

In the United States, every child gets tested for a multitude of rare diseases and conditions at birth. However, each state picks and chooses which rare diseases and conditions they’ll screen for. Pennsylvania, where I live, added Pompe disease to their newborn screening panel in February 2016, a…

Living with or caring for someone with a rare disease means that life is often hectic. Between the endless appointments with specialists, infusions and other therapies, getting sick, and other responsibilities, it can feel like there’s barely any downtime. Eventually, one grows accustomed to the lifestyle, which makes things…

I made it through another year living with late-onset Pompe disease. That puts me at four years on this journey. As 2023 kicks off, I’m starting year five. I’ll be another year older and hopefully wiser come St. Patrick’s Day. We finished the holidays with a big surprise.

Soon, I will attend a meeting to discuss transitioning my 4-year-old son, Cayden, to elementary school during the next school year. I’m both nervous and excited about the meeting and the transition. I knew this day would come, but it feels as if it snuck up on us faster than…

From the time he was born four years ago until now, my son, Cayden, has struggled with eating orally. Because of his infantile-onset Pompe disease, Cayden has weak muscles all over his body, including his mouth and the muscles involved in swallowing. He can’t swallow properly and often would…

After receiving my diagnosis of late-onset Pompe disease, it felt like a weight had been lifted off my shoulders. Finding out that I had a rare disease with a treatment was amazing. At the time, I don’t think I comprehended the fact that those treatments would last forever.