Powering Through Pompe – a Column by Keara Engle

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 than ever. It’s mainly in his legs, but I assume he gets aches and pains elsewhere.

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 for those with infantile-onset Pompe disease, which Cayden was diagnosed with at just 1 month.

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 some insurance challenges that caused a delay. Nevertheless, we finally managed to get him switched, and…

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 our kids crying and mumble, “Just five more minutes, please!” I knew what I was getting…

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 family reunion every year, but during the COVID-19 pandemic, that didn’t happen. I was ecstatic…

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 nurse at our home since he was about 18 months old. The infusions are necessary because…

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 specialists. The appointment was recommended by his metabolic doctor, whom we see every three to…

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 do before my new baby comes next January. Of course, we are happy about the news…

A few weeks ago, during my 4-year-old son Cayden’s physical therapy session with his home-based therapist, we had a conversation about mobility devices. Cayden has infantile-onset Pompe disease, which has caused him to have very low muscle tone. He is unable to walk or bear any weight…

A few months ago, I had to make the hard decision to pull my 4-year-old son, Cayden, out of his preschool class. It wasn’t easy because I knew how much he enjoyed it. At the time, though, his health was at stake. Cayden has infantile-onset Pompe disease, which…