It’s no secret that the holiday season is a busy time for everyone, but imagine having to incorporate a 6.5-hour infusion therapy into the mix of it all. That’s the case for our family because my 6-year-old son, Cayden, has infantile-onset Pompe disease. While planning everything out can be…
home infusions
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 (avalglucosidase alfa), as enzyme-replacement infusions are currently the only treatment option for Pompe disease, which…
Enzyme replacement therapy (ERT) for Pompe disease can be safely implemented at home, according to a study in the Netherlands. “Insights from this study can be used as a base for implementing home-based ERT in other countries and to further optimize patient care,” researchers wrote. The study, “Home-based…
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…
Getting a six-and-a-half-hour enzyme replacement infusion once a week can be stressful. And I’m not even the one getting it. My son, Cayden, 3, gets an infusion called Lumizyme (alglucosidase alfa) to treat his infantile-onset Pompe disease. While the infusions have become routine for…
We are no strangers to our insurance company. While it’s been great in most aspects, we still have to battle it from time to time. Unfortunately, this happens quite often with rare disease patients. Due to his infantile-onset Pompe disease, my 3-year-old son, Cayden, has to…
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…
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…