Powering Through Pompe
— Keara Engle

If you have a rare disease or are the caregiver of someone with a rare disease, then you’re probably no stranger to research companies reaching out to you. Companies conduct a range of…

I can remember my 4-year-old son’s first surgery like it was yesterday. Cayden was just shy of 2 months old when I watched the anesthesia team wheel away my tiny baby. It was…

While my 4-year-old son, Cayden, is no stranger to specialists, it’s always a bit nerve-wracking to meet a new doctor. No matter how many doctors we see, I always worry that Cayden will…

It all starts with the dreaded cough and snotty nose. Next thing you know, you’re rushing your child to the doctor to make sure they’re OK. These days, most parents don’t get too worried…

Recently, I reached out to some other moms in our Pompe family to ask about a concern I’ve had for a while. I’ve noticed my 4-year-old son, Cayden, is complaining of pain more…

My 4-year-old son, Cayden, has been receiving multiple therapies every week for years. He started physical therapy when he was an infant, then speech therapy, and eventually occupational therapy. All are important…

Recently, my 4-year-old son, Cayden, made the long-awaited change to Nexviazyme (avalglucosidase alfa) infusions, a new treatment option for Pompe disease. We have wanted to switch treatments for a while, but faced…

Being a parent can be exhausting. Whether the child is a newborn, a toddler, or even a bit older, there are some days when we hear the alarm go off or wake up to…

Family reunions are big and important events on my dad’s side of the family. Not long ago, my grammy (grandmother) got to host our first family reunion in two years. We usually have a…

Last week, we had our last home infusion for the summer. It was a bittersweet moment for sure. My 4-year-old son, Cayden, has been getting weekly Lumizyme (alglucosidase alfa) infusions from the same…

Last week, my 4-year-old son, Cayden, had a telehealth appointment with a pediatric psychologist. She works in the behavioral health clinic at the children’s hospital where we take Cayden for all his other…

A little over a year ago, I wrote a column discussing the topic of family planning. Recently, we discovered that our family will be growing by one! We have lots of planning to…