Daily living

Although my 3-year-old son, Cayden, loves preschool, I had to make a tough decision not to send him for a while. We have officially entered cold and flu season. While most parents don’t look forward to this time of year, it’s especially terrifying for me. Cayden’s infantile-onset Pompe disease…

Prior to giving birth to my now 3-year-old son, Cayden, I was working part time at a local fast-food restaurant. But when Cayden was born and we discovered he has infantile-onset Pompe disease, working was no longer an option.  As a single parent, I am the…

Once a week, my 3-year-old son, Cayden, receives a six-and-a-half-hour infusion for his infantile-onset Pompe disease. I’ve previously shared a look inside his home infusions. However, some people wonder how we can keep my son entertained and content for such a long period of time. As Cayden has…

All milestones that children reach are important. However, when my son, Cayden, reaches a milestone, it excites me in ways I can’t even explain. When Cayden was diagnosed with infantile-onset Pompe disease at the age of 1 month, I had no clue what to expect. It didn’t help…

One of the symptoms of Pompe disease is muscle weakness. Due to this, many children who have been diagnosed with infantile-onset Pompe disease will be required to wear some type of orthotic braces that are specially designed by an orthotist. When my son, Cayden, was about 15 months old,…

There’s a first time for everything, and this past week was a big first for my family. We loaded up the car and took my son, Cayden, to an amusement park for the first time. While it sure was a lot of fun, there were also some challenges. The first…

Although enzyme replacement infusions were initially very frightening, they have become a part of our routine. My son, Cayden, requires this lifesaving medication due to his infantile Pompe disease. It works by replacing the enzyme that his body cannot make on its own.  For the first…

If you have late-onset Pompe disease (LOPD) and are employed, or are considering employment, you’re likely going to need some workplace adjustments, particularly as the disorder progresses. Here’s some information about how Pompe disease might affect your work life. What is Pompe disease? Pompe disease is a debilitating…

While the effects of late-onset Pompe disease on everyday life are far-reaching, there are steps you can take in your daily routine to help ease these difficulties and work around your limitations. It just takes some advance planning, a little bit of creativity, and perhaps some adaptive equipment.

Patients with late-onset Pompe disease (LOPD) usually develop breathing problems as the disease progresses. If you have LOPD, you may eventually need ventilation to aid your breathing. Here is more information about how Pompe affects breathing and about ventilators that may help to ease the disease’s symptoms. How…