Powering Through Pompe – a Column by Keara Engle

Recently, I read an article here at Pompe Disease News that brought me back to six years ago, when my son Cayden was a newborn. The article, “Twins do well on high-dose ERT plus immune tolerance induction,” reminded me of when Cayden was going through a similar experience. Cayden…

I remember the day my 6-year-old son, Cayden, was diagnosed with infantile-onset Pompe disease like it was yesterday. Hearing the news broke me, and I was scared half to death. I had no idea what to expect, and searching the internet didn’t help because I came across a…

Many folks don’t know what an implantable venous port is and what it’s used for. However, my 6-year-old son, Cayden, is very familiar with it and its purpose. Cayden received a port when he was just 8 weeks old, which is atypically young for a child. He was having…

Two weeks ago, I gave birth to another beautiful baby boy named Kylan. Our family is ecstatic about our new addition, and Kylan feels like the last piece to our puzzle. My 6-year-old son, Cayden, and 20-month-old son, Kyree, love to hold him and help do things for their baby…

After attending new student orientation at my 6-year-old son Cayden’s new school a few weeks ago, we eagerly anticipated the first day of classes. Now that he has officially completed the first week of first grade, we have lots of great updates to share. Every day when Cayden arrived…

Back in May, we made the hard but necessary decision to move to a new place. Our old apartment was just too small for our growing family. Plus, it wasn’t very accessible for my 6-year-old son to navigate with his wheelchair. We were on the hunt for a place that…

Every other week like clockwork, we stay home for a day so my 6-year-old son, Cayden, can receive his enzyme replacement infusion. These infusions are the only treatment option for infantile-onset Pompe disease, the rare disease that Cayden was diagnosed with via newborn screening shortly…

Last week, my two sons — Cayden, 6, and Kyree, 18 months — and I had our routine checkup at the dentist. I’m happy to report that no one had cavities! Luckily, my boys enjoy brushing their teeth and never go to bed without reminding me to get their…

As if we hadn’t had a busy enough summer with all of our bowling trips and arcade outings, we decided to plan another day of fun-filled activities last week. My boyfriend, Frankie, and I loaded up the car and headed to Hershey, Pennsylvania, with my two kids, Cayden,…

This summer, I’ve been trying to find fun activities to do with my children. One of our most recent adventures was a trip to the arcade. My 6-year-old son, Cayden, who has infantile-onset Pompe disease, really enjoyed himself, as did his 18-month-old little brother, Kyree. My boyfriend and younger…