Powering Through Pompe
— 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…

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,…

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…

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.

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…

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…

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…

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…

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,…

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,…

House hunting isn’t easy, especially when you’re searching for an affordable wheelchair-accessible home. But thankfully, we managed to find a beautiful one that fits our monthly budget for rent, and drumroll … it’s wheelchair accessible! We’ve been planning…

Parents never want to see their children experience anything hard or painful. Yet I can recall many times when I’ve had to put my 6-year-old son, Cayden, through something difficult for his own good. One of my memories from…