Kate’s Take on Rare Care - a Column by Kate Manger

People often tell me they can’t imagine what it’s like to parent a child with a rare disease. I know they mean well. Sometimes they say I’m stronger than they could ever be, or call me a superhero, or wonder how I manage it all. I understand what they’re trying…

After my daughter Caroline was diagnosed with Pompe disease, the question that kept me up at night wasn’t what had happened or how. It was why. Why did this happen to her? Why our family? And why me? I immediately began replaying my pregnancy. My husband and I had…

When people meet my daughter Caroline, they often call her brave. They see a little girl enduring enzyme replacement therapy every other week, the port in her chest, long infusion days, doctor’s appointments, blood draws, and tests. She smiles through experiences that would make most adults cringe, and people…

I could sense from the moment we woke up that this infusion day was going to be a tough one. Over the past several months, I’ve shared how my 7-year-old daughter Caroline’s relationship with her infusions has been changing. When she was younger, she cried because she was scared…

When your child is diagnosed with Pompe disease, it’s like being caught in a storm of information. Suddenly, you’re overwhelmed with medical terms, appointments, and emotions. I remember feeling like I was trying to drink from a firehose. It took me months, perhaps years, to…

One thing I’ve realized as a mom raising a child with Pompe disease is that I never truly know when her condition is on my daughter’s mind. I always know when it’s on mine — when I’m refilling prescriptions, making appointments, planning infusions, or quietly noticing new…

People often ask how my daughter Caroline handles her infusions. The answer changes depending on the season of life we’re in. Sometimes even the day. When Caroline was a baby, accessing her port was so hard. She didn’t understand what was happening — only that strangers held her down…

Tomorrow, my daughter Caroline has an infusion. If you asked her about her summer excitement, she’d talk about the pool. The weather has been beautiful, and we’ve taken full advantage. In these first days of summer, she splashes with friends, races barefoot across the deck, begs for “just five more…

After my daughter Caroline was diagnosed with late-onset Pompe disease, I never imagined how complicated the idea of stability would become for our family. Before rare disease entered our lives, stability felt simple. It was something you wanted, something you worked toward, and something that brought comfort and peace.

Something I never expected about raising kids with medical conditions is how much people rely on appearances to decide who is “sick” and who isn’t. Before rare disease became part of our family, I’m sure I did this, too, without even thinking about it. Most of us do. We think…