Ironically, I feel guilty about my son’s Pompe disease treatment
I remember the day my 6-year-old son, Cayden, was diagnosed with infantile-onset Pompe disease like it was yesterday. Hearing the news broke me, and I was scared half to death. I had…
Social media is right at our fingertips. Most adults, teenagers, and even preteens are equipped with cellphones or some other device that can access the internet. While the web can be used for many…
Read moreI remember the day my 6-year-old son, Cayden, was diagnosed with infantile-onset Pompe disease like it was yesterday. Hearing the news broke me, and I was scared half to death. I had…
Many folks don’t know what an implantable venous port is and what it’s used for. However, my 6-year-old son, Cayden, is very familiar with it and its purpose. Cayden received a port when…
Two weeks ago, I gave birth to another beautiful baby boy named Kylan. Our family is ecstatic about our new addition, and Kylan feels like the last piece to our puzzle. My 6-year-old son,…
After attending new student orientation at my 6-year-old son Cayden’s new school a few weeks ago, we eagerly anticipated the first day of classes. Now that he has officially completed the first week…
Back in May, we made the hard but necessary decision to move to a new place. Our old apartment was just too small for our growing family. Plus, it wasn’t very accessible for my…
Every other week like clockwork, we stay home for a day so my 6-year-old son, Cayden, can receive his enzyme replacement infusion. These infusions are the only treatment option for infantile-onset…
Last week, my two sons — Cayden, 6, and Kyree, 18 months — and I had our routine checkup at the dentist. I’m happy to report that no one had cavities! Luckily, my…
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,…
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…
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…
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,…
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…
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