pneumonia

It all starts with the dreaded cough and snotty nose. Next thing you know, you’re rushing your child to the doctor to make sure they’re OK. These days, most parents don’t get too worried about a common cold, unless COVID-19 is a concern. But once that’s ruled out, things…

A few months ago, I had to make the hard decision to pull my 4-year-old son, Cayden, out of his preschool class. It wasn’t easy because I knew how much he enjoyed it. At the time, though, his health was at stake. Cayden has infantile-onset Pompe disease, which…

I often have to explain my son Cayden’s rare disease to medical professionals. But sometimes, they need more help than I can offer. While my knowledge of Pompe disease is pretty advanced, there are some questions I just don’t have answers to.  Cayden, 3, has been…

Last week, my 3-year-old son, Cayden, was discharged after a two-month hospitalization due to pneumonia caused by a human parainfluenza virus. Several unfortunate events occurred during this time, and as a result, I’ve been left with a variety of emotions, both good and bad. Coping with…

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…

As a rare disease parent, I’ve dealt with many situations. Some are happy, and some are scary. The past week has been one of the hardest by far. It started with a common cold. Usually, my 3-year-old son, Cayden, who has infantile-onset Pompe disease, can deal with a cold…