In my last column, as part of “The Pompe Community Diaries” series, I introduced 59-year-old Steve Bersani, who lives with Pompe disease and served in the Boston Police Department for 30 years before retiring in 2018. In recent video chats with Bersani, we discussed the issues he faces…
Daily living
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…
“The Pompe Community Diaries” is a series that follows the journeys, musings, and challenges of those in the Pompe disease community. This week, I’m introducing Steve Bersani. Steve served as an officer in the Boston Police Department for 30 years before retiring in 2018. He operated in…
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…
Amid the chaos of the holidays, our family experienced a little more than we bargained for. The day after Christmas, I woke up feeling unwell. My body ached, and as the day went on, I developed a fever with chills. I tried to push through, but by the next day,…
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…
It’s no secret that the holiday season is a busy time for everyone, but imagine having to incorporate a 6.5-hour infusion therapy into the mix of it all. That’s the case for our family because my 6-year-old son, Cayden, has infantile-onset Pompe disease. While planning everything out can be…
My 6-year-old son, Cayden, has been seeing an ear, nose, and throat (ENT) doctor since he was about 2 years old. His metabolic disease specialist, who manages everything related to Cayden’s infantile-onset Pompe disease, originally referred him to the ENT department because this type of Pompe is known to…
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