Powering Through Pompe – a Column by Keara Engle

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…

Every month, we receive a package at our house for my 6-year-old son, Cayden, worth almost $14,000. What could cost so much, you might wonder? Life-saving medication. Cayden receives biweekly infusions of Nexviazyme (avalglucosidase alfa), as enzyme-replacement infusions are currently the only treatment option for Pompe disease, which…

Now that summer is here in full force, I’ve been finding things to do with my 6-year-old son, Cayden, and his baby brother, Kyree. We’re now battling a terrible heat wave here in Pennsylvania, which makes going outside miserable. We’ve been experiencing temperatures in the 90s for days on end,…

I was recently confronted with some scheduling issues. While it’s not the first time this has happened, it’s also not very common. I was on my way to the lab to take my glucose test for my current pregnancy when I received a text from our home nursing agency’s case…

For the first time ever, my 6-year-old son, Cayden, enjoyed a night of bowling. We discovered a program called Kids Bowl Free. Bowling allies that participate in this program offer kids ages 2-15 two free games every day during the summer. My mom and I took advantage of this amazing…

As the school year comes to an end, my 6-year-old son, Cayden, had a kindergarten graduation ceremony. I was so glad I could attend, because Cayden was really looking forward to it. His face lit up when he saw my mother and me in the crowd. My favorite part…

Last week, for the first time, I was able to watch my 6-year-old son, Cayden, participate in a field day at school. I remember having field days when I was in elementary school and was excited for Cayden to have a similar experience. Parents were invited to tag along…

Last week, I sat down with the folks who assisted my 6-year-old son, Cayden, during this past school year. The team included a learning support teacher, his kindergarten teacher, and his three therapists — an occupational therapist, physical therapist, and speech therapist. The purpose of the meeting…

Note: This column describes the author’s son’s experiences with Nexviazyme and Lumizyme. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy or changing its dose. My 6-year-old son, Cayden, has received infusions of enzyme replacement therapy for the entirety…