parenting

Parents face significant anxiety and uncertainty after their newborn screens positive for a lysosomal storage disorder (LSD) like Pompe disease, but these emotions usually resolve over time once families receive clear, comprehensive information, a new study finds. However, researchers warn that this anxiety often persists in parents whose children…

A man was diagnosed with late-onset Pompe disease (LOPD) after prenatal genetic counseling, even though he exhibited no symptoms. “This example stresses the importance of pretest consultation and the relevance of clinical and ethical implications during prenatal genetic testing for the whole family group,” scientists wrote. His condition was…

I have always struggled with my weight. In elementary school, I remember visiting a nutritionist and coming up with a diet plan. Over the years, I’ve tried multiple times to implement a diet and exercise regimen, but I could never seem to stick to it. Now, I’m taking things a…

The past six months with my newest baby boy, Kylan, have been pure bliss — apart from his acid reflux. For the first three months, Kylan was strictly breastfed. Everything was going well with my supply, and he was getting plenty of milk. However, he was constantly spitting up. Kylan…

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…

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…