Sean Doerr is sometimes known in the Pompe community as the man with the ambulance-turned-motor home, which he affectionally calls the “PompeTrek.” Sean has Pompe disease and type 1 diabetes. I recently spoke with him via video chat about what it’s like living with these two chronic illnesses. Excerpts…
Daily living
Ever since he was an infant, my son Cayden, who’s now 7, has needed to use orthotic devices. He was diagnosed with infantile-onset Pompe disease via newborn screening, and these devices seem to be common among that community. His journey with orthotic devices started when he was a few…
As summer approaches, I’ve been thinking a lot about whether I want to move my children into a new house. We could use another bedroom, as I have three little boys now, and my youngest, Kylan, who’s 7 months old, will be ready to transition out of my bedroom soon.
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…
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…
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