Powering Through Pompe – a Column by Keara Engle

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…

Oftentimes, a person with a rare disease may struggle with day-to-day activities such as walking, talking, eating, and getting dressed. This is the case for my 3-year-old son, Cayden. At the young age of 1 month, Cayden was diagnosed with a very rare genetic disease known as infantile-onset Pompe…

Although my 3-year-old son, Cayden, loves preschool, I had to make a tough decision not to send him for a while. We have officially entered cold and flu season. While most parents don’t look forward to this time of year, it’s especially terrifying for me. Cayden’s infantile-onset Pompe disease…

I will always be grateful I found our Pompe disease family. It brings me great joy when others find us and join the community, too.  A Facebook blog I made for my 3-year-old son, Cayden, started off fairly small. But over the…

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…

Prior to giving birth to my now 3-year-old son, Cayden, I was working part time at a local fast-food restaurant. But when Cayden was born and we discovered he has infantile-onset Pompe disease, working was no longer an option.  As a single parent, I am the…

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…