Columns

Explaining My Son’s Rare Disease to Medical Professionals

In a perfect world, we might expect doctors and nurses to know about every medical issue that could possibly arise. However, this just isn’t possible. Although these professionals go through many years of schooling, they can’t be taught about every disease, especially if it’s a rare one. Over the years,…

Fighting With Insurance About Lifesaving Medication

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…

Explaining Hard Topics to My Rare Disease Toddler

Getting a toddler to understand things is a hard enough task by itself. However, trying to get my 3-year-old son, Cayden, to understand the things he has to go through due to his Pompe disease is even more challenging. Because of Pompe disease, he has been through more hardships than…

How Doctors and Nurses Have Helped During Difficult Times

Dealing with stressful situations can be hard for anyone, but I’m especially struggling because my 3-year-old son, Cayden, has been hospitalized since Aug. 5. In my previous column, I mentioned that he had to be intubated due to pneumonia. This has been very hard on me mentally. And because…