Often my columns are concerned about my oldest son’s health, given his rare disease. This week, however, I had reasons to worry about and care for my broader family’s health — including my own. Recently, I had to take a break from writing, as I’ve been dealing with some personal…
parenting
For the past two weeks, my children and I have been unable to catch a break from the common cold. It all started with my 6-year-old son, Cayden, who brought home an illness from school. It’s inevitable during cold and flu season, but it sure makes for a miserable experience.
My 6-year-old son, Cayden, absolutely loves going to school. He’s doing exceptionally well in first grade. A few weeks ago, during routine testing, Cayden received the highest scores in the entire class. I’d be lying if I said I didn’t brag a little to friends and family about the high…
Our 6-year-old child, Geno, who was diagnosed with Pompe disease via newborn screening, has for years told classmates he can’t eat candy. During snack time, at friends’ birthday parties, or holidays like Halloween, sometimes he’ll say he’s allergic to it. Luckily, we have a great group of kids…
Living in Pennsylvania means having to deal with some pretty brutal winters. We do get to experience all four seasons, which is beautiful, but when the cold weather comes, it can be a bit tricky for some folks to handle. My 6-year-old son, Cayden, has always had a hard time…
My 6-year-old son, Cayden, has been using a feeding tube since he was a newborn. Although I feared the tube at first, I’ve learned to be thankful for its benefits. Cayden required a feeding tube as a result of symptoms related to his infantile-onset Pompe disease; in…
Weight gain is something my 6-year-old son, Cayden, has struggled with his whole life. He had difficulty eating as a newborn because of his weak sucking and swallowing muscles — a direct result of his infantile-onset Pompe disease. When he was a month old, his medical team decided it…
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…
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- What a child with Pompe disease taught me about being a parent
- Switching therapies may stabilize walking decline in late-onset Pompe