Columns

I recently attended a meeting for my 6-year-old son, Cayden, at his elementary school. So many people are working with Cayden at school, including his teacher, nurse, and physical, occupational, and speech therapists. Because of this, we felt it was important for all of us to sit down and…

It’s been over six years since my son Cayden was born with infantile-onset Pompe disease. Today, I consider myself to be an experienced parent when it comes to this disease. However, I’ll never forget what it felt like to hear the news of Cayden’s diagnosis. It’s almost an indescribable…

Next week, my 6-year-old son, Cayden, will celebrate something even more exciting than Halloween: He’ll be headed to Parris Island in South Carolina to watch my younger brother, Ben, graduate from the Marine Corps. I’m so thankful that Cayden has the opportunity to watch his uncle celebrate such…

Recently, I read an article here at Pompe Disease News that brought me back to six years ago, when my son Cayden was a newborn. The article, “Twins do well on high-dose ERT plus immune tolerance induction,” reminded me of when Cayden was going through a similar experience. Cayden…

I remember the day my 6-year-old son, Cayden, was diagnosed with infantile-onset Pompe disease like it was yesterday. Hearing the news broke me, and I was scared half to death. I had no idea what to expect, and searching the internet didn’t help because I came across a…

Many folks don’t know what an implantable venous port is and what it’s used for. However, my 6-year-old son, Cayden, is very familiar with it and its purpose. Cayden received a port when he was just 8 weeks old, which is atypically young for a child. He was having…

Two weeks ago, I gave birth to another beautiful baby boy named Kylan. Our family is ecstatic about our new addition, and Kylan feels like the last piece to our puzzle. My 6-year-old son, Cayden, and 20-month-old son, Kyree, love to hold him and help do things for their baby…

After attending new student orientation at my 6-year-old son Cayden’s new school a few weeks ago, we eagerly anticipated the first day of classes. Now that he has officially completed the first week of first grade, we have lots of great updates to share. Every day when Cayden arrived…

Back in May, we made the hard but necessary decision to move to a new place. Our old apartment was just too small for our growing family. Plus, it wasn’t very accessible for my 6-year-old son to navigate with his wheelchair. We were on the hunt for a place that…

Every other week like clockwork, we stay home for a day so my 6-year-old son, Cayden, can receive his enzyme replacement infusion. These infusions are the only treatment option for infantile-onset Pompe disease, the rare disease that Cayden was diagnosed with via newborn screening shortly…