Keara Engle,  —

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,…

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…

Being the parent of a special needs child can be difficult in many ways. One challenge is the effect it has on mental health, which makes self-care essential for parents of special needs children. But it also can take a physical toll on the body. One way parents can…

I’ve previously discussed how doctors and nurses can help in difficult times of health crises. But family and friends can be a big help, too. My 3-year-old son, Cayden, has been hospitalized in recent weeks, so I’ve pondered some of the ways that my family and friends have…

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…

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…

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…

When my son, Cayden, was diagnosed with infantile-onset Pompe disease, I experienced a multitude of different emotions. One of the biggest things I struggled with was the guilt that came along with his diagnosis. Because Pompe is a genetic disease, I know I am part of the reason my son…

All milestones that children reach are important. However, when my son, Cayden, reaches a milestone, it excites me in ways I can’t even explain. When Cayden was diagnosed with infantile-onset Pompe disease at the age of 1 month, I had no clue what to expect. It didn’t help…