Powering Through Pompe – a Column by Keara Engle

My 5-year-old son, Cayden, will soon be getting a new kindergarten teacher. While this will be a big adjustment for all the children in his class, it will be a bit harder for Cayden, who has some special needs. Cayden’s original teacher recently told us that she has accepted…

My 5-year-old son, Cayden, has been through more in his few years of life than most adults have in all of theirs. When he was diagnosed with infantile-onset Pompe disease via newborn screening shortly after his birth, I knew his life wouldn’t be easy. But I had…

I’ve become so used to my routines that when an abrupt change happens, it throws me off. Recently, a substitute nurse filled in for the one who usually attends school with my 5-year-old son, Cayden, who has infantile-onset Pompe disease. Cayden is accustomed to having a nurse with him…

I’ve been on the hunt for adaptive clothing for years now. My 5-year-old son, Cayden, does fine with regular clothes, but that’s only because we’ve learned how to make it work. Adaptive clothing is something we all enjoy. It makes using his feeding tube much more manageable. Cayden…

My 5-year-old son, Cayden, has seen a nutritionist his entire life. In his younger years, this was important because Cayden was underweight. Recently, he has gained weight, but the visits are still necessary because he’s tube-fed. Thankfully, Cayden is able to see his nutritionist at the same time as…

For years, it’s been evident that my 5-year-old son, Cayden, has extremely sensitive skin. We first noticed the issue during one of his hospitalizations as a baby. We were at the children’s hospital for his enzyme replacement infusion, and when they removed the dressing from his port…

My 5-year-old son, Cayden, is on track with most children his age when it comes to height and weight. But we struggled with his weight for years. He was labeled “failure to thrive” when he was just 4 weeks old. It took until about the age of 1 for…

Today is my son Cayden’s first day of kindergarten — a milestone I’ve been anticipating since he was born. While I’m ready for the break, watching him grow up is bittersweet. Kindergarten feels like such a big step compared with preschool. The transition should be pretty easy because…

I’m sure most people in the U.S. have heard of the Americans with Disabilities Act (ADA), a civil rights law that protects people with disabilities from discrimination in all areas of life. It became law in 1990, and its sole purpose is to ensure that people with disabilities are…

A few weeks ago, my grandparents and I purchased a wagon for my kids. I have a 5-year-old son, Cayden, and a 7-month-old son, Kyree. I’ve wanted a wagon for them for quite some time now, and we were finally able to make it happen. While this may not seem…