Powering Through Pompe
— Keara Engle

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Keara Engle is located in south-central Pennsylvania and has lived there her whole life. Keara is a single mother and has two little boys, Cayden and Kyree. Her oldest, Cayden, was born in February 2018 and was diagnosed with infantile-onset Pompe disease shortly after. He was the first baby in Pennsylvania diagnosed via newborn screening. She hopes that her column, “Powering Through Pompe,” will bring comfort to those that are also dealing with Pompe disease. She remembers how scary it was when her son was first diagnosed and wants to help guide others through their journey.
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Having a nurse at home over the summer has been a big help

This summer, for the first time, I made a big decision to reach out for help for my oldest son, Cayden, who is 7 and was born with infantile-onset Pompe disease. A nurse attends school with him every day during the school year, but in the past, I’ve declined…

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A new wagon helps me transport my kids more easily

A few weeks ago, my grandparents and I purchased a wagon for my kids. I have a 5-year-old son, Cayden, and a 7-month-old son, Kyree. I’ve wanted a wagon for them for quite some time now, and we were finally able to make it happen. While this may not seem…

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The results of my son’s latest swallow study were disappointing

My 5-year-old son, Cayden, recently had a swallow study done for the first time since he was 3. Although he cooperated much better this time, we still didn’t get the desired results. When he was younger, Cayden required many swallow studies due to his infantile-onset Pompe disease. Because…

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Why an upcoming play date means so much to our Pompe family

My 5-year-old son, Cayden, had a blast in preschool this year and made lots of new friends. I was nervous he wouldn’t make any because he’s a bit different from the other children in his class. However, I quickly realized I had nothing to worry about. Cayden has…

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How my 2 children comfort each other, despite a 5-year age gap

Having two young children has already been quite an experience. They depend on me every single day, though, thankfully, they’re pretty easygoing. I’d been a little nervous about their almost five-year age gap, but the way they’ve formed a bond has been amazing to witness. It’s so sweet to watch…

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I’m skeptical that my son with Pompe will ever stand on his own

I wrote a column this spring about my 5-year-old son, Cayden, needing to see an orthopedic specialist again. Well, we finally had that appointment late last month, with a doctor he hadn’t seen before. It didn’t go as well as I’d hoped. When Cayden’s metabolic specialist sent the…

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How the pool benefits my son, who has limited mobility due to Pompe

Last week, we had our first pool day of the summer. I got pool passes for myself and my 5-year-old son, Cayden, who really enjoyed it last year. In fact, he’s been consistently asking to go again. But here in Pennsylvania, summer is the only time it’s warm enough to…

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How the recent poor air quality affected our rare disease family

Like much of the East Coast, we’ve been experiencing poor air quality here in Pennsylvania due to smoke from Canadian wildfires. In my 21 years, I don’t think I can remember a time when our air quality was this bad. Fortunately, we’re in the south-central part of Pennsylvania, so…

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Lung problems and Pompe test a mother with another sick child

Last week, both of my children ended up sick. It started off on Memorial Day when my 5-month-old son, Kyree, developed pink eye. The doctor’s office was closed on the holiday, but I got him seen the next day. Aside from the pink eye, he was acting completely normal and…

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My son is missing out on preschool due to the ongoing nursing shortage

Last February, my 5-year-old son, Cayden, started a preschool program at one of the local elementary schools. The program would prepare him for kindergarten, which he’ll start this fall. So far, preschool has been amazing for him. A nurse has to accompany Cayden to preschool for several reasons. First,…

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We’re adding a new specialist to my son’s care team

Last week, my 5-year-old son, Cayden, had his annual well-child check with his pediatrician. He wasn’t due for any vaccines, and for the most part, the visit was fairly uneventful. We try to see the same doctor for these appointments, as she’s familiar with Cayden and all of his…

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In search of a more accessible playground for my son with Pompe

Typically, when we think of playgrounds, we envision children running around, having the time of their lives. But this isn’t always the case. For my 5-year-old son, Cayden, it’s a bit hard to enjoy the playground. Cayden is in a wheelchair, so sometimes he has trouble accessing playground equipment.


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