A little over a year ago, I wrote a column discussing the topic of family planning. Recently, we discovered that our family will be growing by one! We have lots of planning to do before my new baby comes next January. Of course, we are happy about the news…
Powering Through Pompe – a Column by Keara Engle
A few weeks ago, during my 4-year-old son Cayden’s physical therapy session with his home-based therapist, we had a conversation about mobility devices. Cayden has infantile-onset Pompe disease, which has caused him to have very low muscle tone. He is unable to walk or bear any weight…
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…
A few weeks ago, I discussed how we were eyeing a medication switch to Nexviazyme (avalglucosidase alfa) for my 4-year-old son, Cayden. But switching to this new drug may not be as easy as his doctors and I were hoping. Cayden has been receiving Lumizyme (alglucosidase alfa) infusions…
When my 4-year-old son, Cayden, goes to the doctor, it’s usually to see one of the many specialists for his infantile-onset Pompe disease. While they are helpful and the appointments are necessary for us, I know that not every child is normally seen and followed by so many…
It’s no secret that COVID-19 has caused a lot of issues for not just the United States, but the entire world. Because of the pandemic, for example, we’ve recently been experiencing issues getting the necessary medical supplies for my 4-year-old son, Cayden, who has infantile-onset Pompe disease. Cayden…
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Why I Choose to Share Our Story
When you have a child, you have so many concerns and thoughts. One came up soon after I had my son, Cayden, four years ago. He was diagnosed with infantile-onset Pompe disease at just 1 month. At the time, I had no clue whether I wanted others to know his…
A few days ago, my 4-year-old son, Cayden, visited one of the specialists that he sees less frequently: the otolaryngologist, or ear, nose, and throat (ENT) doctor. Cayden’s been seeing this doctor since he was about 2. These checkups are necessary because Cayden has experienced hearing loss due to…
I’m no stranger to our local urgent care clinics and hospitals. Usually, my 4-year-old son, Cayden, is the patient. Last week, however, it was my turn to need medical help. I had an unexpected fall off a friend’s porch steps and immediately felt the pain. This is my first time…
When strangers notice the differences between my son, Cayden, and other 4-year-olds, they usually have a lot of questions. While I genuinely don’t mind taking the time to educate and inform people about infantile-onset Pompe disease, explaining things over and over can be a bit overwhelming. I can’t expect people…