I’m going to be dating myself here, but let’s go for it. Not quite the Stone Age, but around the time “The Flintstones” was on television, I remember watching the “MDA Labor Day Telethon” one year with my parents. I wasn’t sure why we were watching this and not some…
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Until last year, my 5-year-old son, Cayden, rarely talked. He said a few words here and there, but they were hard to understand and limited to about five to 10 words total. His struggles with speech stem from his infantile-onset Pompe disease. Children diagnosed with this form of…
A long time ago, in a galaxy far, far away, I was celebrating 36 years on this planet. I’d just returned from the mountains in my landspeeder when I received a phone call from my sister. My dad, who was five months into his second round of…
My 5-year-old son, Cayden, is no stranger to enzyme replacement infusions. He’s been getting them on either a weekly or biweekly basis since he was only 4 weeks old. It’s currently the only treatment option for Pompe disease, the rare genetic disease he was born with. Fortunately,…
Back in the summer of 2018, when I started experiencing some serious symptoms, I wondered if I had ALS or another similar disorder. I noticed I wasn’t able to stand up from a seated position. If I was sitting on the couch, I’d have to extend my arms…
My 5-year-old son, Cayden, recently started a preschool program. When he started going, I was a little paranoid about whether he’d make friends. After a month there, however, he sure has made a few. I was concerned because Cayden has weak muscles from his infantile-onset Pompe disease; it’s…
Typically, my 5-year-old son, Cayden, who has infantile-onset Pompe disease, has no problem going away with family for the weekend. He used to spend weekends with either my grandparents or his paternal grandmother. But that’s changed, as he now refuses to leave my side. It all started a few…
Today, March 17, is the day to celebrate all things green and Irish. Look for a four-leaf clover and have some Lucky Charms for breakfast because they’re “magically delicious.” Drink some green beer and have corned beef and cabbage for dinner. Search for the pot of gold at the end…
My 5-year-old son, Cayden, was really looking forward to starting preschool at the end of February. But after only a week of school, he became sick. While this didn’t really come as a surprise, it was a bit disappointing. I know that colds and the flu can spread like wildfire…
This past week has been heavy on my heart, with my mind full of anger and frustration. I just want to go to the driving range and hit a bucket of golf balls to release some of the stress. While these feelings are not about my journey, they are…