Powering Through Pompe – a Column by Keara Engle

Last week, we celebrated my son Cayden’s fifth birthday. Birthdays are a big milestone for all children, but this year felt extra special for us. I never knew if I would see this day, and I’m so thankful that I did. Cayden was diagnosed with infantile-onset Pompe disease…

Every other week, my son Cayden, who’s almost 5, receives an enzyme replacement infusion as part of his treatment for infantile-onset Pompe disease. The infusion typically takes about six hours, and although we’re used to the routine, it does make for a very long day. Cayden has…

My soon to be 5-year-old son, Cayden, goes through a lot at his young age. Due to his infantile-onset Pompe disease, he has experienced many hardships. One of our current struggles is getting him to let me administer his breathing treatments. One symptom of Pompe disease is breathing problems.

My 4-year-old son, Cayden, has been seen by many different specialists over the course of his life. I often wonder how he feels about all of the medical appointments. At this age, most of his peers only see the doctor for well-child visits or if they become sick. In…

In today’s world, nurses are in high demand, and thus they’re also hard to come by. Because of this, my 4-year-old son, Cayden, who has infantile-onset Pompe disease, is unable to attend preschool at the moment. Awhile ago, I wrote a column about…

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…

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…

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…

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…