Powering Through Pompe – a Column by Keara Engle

As summer approaches, I’ve been thinking a lot about whether I want to move my children into a new house. We could use another bedroom, as I have three little boys now, and my youngest, Kylan, who’s 7 months old, will be ready to transition out of my bedroom soon.

The past six months with my newest baby boy, Kylan, have been pure bliss — apart from his acid reflux. For the first three months, Kylan was strictly breastfed. Everything was going well with my supply, and he was getting plenty of milk. However, he was constantly spitting up. Kylan…

Often my columns are concerned about my oldest son’s health, given his rare disease. This week, however, I had reasons to worry about and care for my broader family’s health — including my own. Recently, I had to take a break from writing, as I’ve been dealing with some personal…

For the past two weeks, my children and I have been unable to catch a break from the common cold. It all started with my 6-year-old son, Cayden, who brought home an illness from school. It’s inevitable during cold and flu season, but it sure makes for a miserable experience.

Social media is right at our fingertips. Most adults, teenagers, and even preteens are equipped with cellphones or some other device that can access the internet. While the web can be used for many purposes, one of my favorites to date has been to browse social media for people who…

My 6-year-old son, Cayden, absolutely loves going to school. He’s doing exceptionally well in first grade. A few weeks ago, during routine testing, Cayden received the highest scores in the entire class. I’d be lying if I said I didn’t brag a little to friends and family about the high…

Amid the chaos of the holidays, our family experienced a little more than we bargained for. The day after Christmas, I woke up feeling unwell. My body ached, and as the day went on, I developed a fever with chills. I tried to push through, but by the next day,…

Living in Pennsylvania means having to deal with some pretty brutal winters. We do get to experience all four seasons, which is beautiful, but when the cold weather comes, it can be a bit tricky for some folks to handle. My 6-year-old son, Cayden, has always had a hard time…

My 6-year-old son, Cayden, has been using a feeding tube since he was a newborn. Although I feared the tube at first, I’ve learned to be thankful for its benefits. Cayden required a feeding tube as a result of symptoms related to his infantile-onset Pompe disease; in…

Weight gain is something my 6-year-old son, Cayden, has struggled with his whole life. He had difficulty eating as a newborn because of his weak sucking and swallowing muscles — a direct result of his infantile-onset Pompe disease. When he was a month old, his medical team decided it…