education

Last week, I sat down with the folks who assisted my 6-year-old son, Cayden, during this past school year. The team included a learning support teacher, his kindergarten teacher, and his three therapists — an occupational therapist, physical therapist, and speech therapist. The purpose of the meeting…

Life has been a bit hectic lately. My family has many changes coming up, and each one brings its own challenges. I’ve lived in the same town for most of my life, as have my children. But that may soon change. Our family is growing, and we’ll be welcoming another…

Soon, I will attend a meeting to discuss transitioning my 4-year-old son, Cayden, to elementary school during the next school year. I’m both nervous and excited about the meeting and the transition. I knew this day would come, but it feels as if it snuck up on us faster than…

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…

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…

I take pride in teaching children about disabilities. The earlier they learn, the better. These small lessons can be very beneficial as children grow up and learn that everyone is different.  My 3-year-old son, Cayden, is only 15 months younger than my little brother, Larry Jr.,…

Adults with late-onset Pompe disease in the U.K reported a long and distressing diagnostic process, with most patients calling in interviews for a reduced time to diagnosis, a shorter wait for a specialist appointment, and an earlier treatment start, a study found. At diagnosis — which often came only…

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,…