Making Hard Decisions for My Child With a Rare Disease

Keara Engle avatar

by Keara Engle |

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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 means he has hypotonia, or very low muscle tone. Because of this, his lungs and upper airway are weaker than a typical child his age. He has an extremely hard time fighting off illnesses that usually wouldn’t cause many problems.

I’m worried that sending him to preschool would significantly increase his odds of catching a cold. Aside from the COVID-19 virus, there are many infections that could put Cayden in a life-or-death situation. I cannot in good faith send him somewhere he may come in contact with a multitude of viruses.

His last hospitalization was very scary. At times, the doctors and I weren’t sure if he’d pull through. One virus led to pneumonia, which led to respiratory failure. Cayden struggled for two months before he was finally able to come home. Watching my child fight for his life was one of the hardest things I have ever experienced.

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After talking to Cayden’s doctors, we’ve decided it’s best not to send him to preschool for the time being. Although it’s a great opportunity for him to learn, play, and socialize, it’s just not worth the risks. No amount of hand-washing, facial masking, or social distancing can ensure that he won’t come into contact with a virus.

It’s upsetting that we had to pull Cayden from preschool for now, but it’s in his best interest. When you have a child with a rare disease, you have to weigh the pros and cons of many situations. This is certainly one of those times!

Thankfully, Cayden is still young enough to not really recognize what’s going on. He doesn’t even realize that it’s been a few months since he was able to go to preschool. I’m sure he will love to return when the time comes. But for now, he’s able to enjoy some time at home with Mommy again!

My hope is that he will be able to return to preschool once we get through cold and flu season. However, we will cross that bridge when we come to it. My biggest priority is keeping him healthy and safe, even if that means staying home.

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Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.

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