Fabry disease can’t dampen the adventurous spirit of my kids
A columnist's twin sons embark on overseas adventures
I grew up in a missionary family, and we were constantly moving. By the time I was in the fourth grade, we’d lived in six different countries. Moving around the world, experiencing new cultures, and interacting with all kinds of people were formative for me. I love travel, adventure, and trying new things.
My own children haven’t had the international upbringing that I did, but I do want them to experience the world. In fact, when my twin sons, Michael and Anthony, were diagnosed with Fabry disease, a rare inherited condition, and told they’d need to be treated with enzyme replacement therapy (ERT) for life, one of the first questions we asked was how it’d affect their ability to travel. I wanted them to inherit more than a gene mutation from me; I’d hoped they’d also acquire my adventurous spirit. I wanted them to be free to explore the world.
In 2023, both Michael and Anthony were able to travel abroad for a semester. In the spring, Anthony studied at Benedictine College’s campus in Florence, Italy, and in the fall, Michael studied at the Franciscan University of Steubenville’s campus in Gaming, Austria.
Before their first trip across the pond, the boys had to weigh the pros and cons of changing or pausing their treatment plans. Thankfully, Fabry disease didn’t prevent them from experiencing what both of them described as their most exciting semester of college. They loved their time in Europe, and they made wise use of the fact that they weren’t being treated with ERT, which allowed them to transition into a clinical trial for an investigational Fabry treatment when they returned home.
Taking the bull by the horns
A couple weeks ago, Michael, who is 22, took off to Europe again to spend 10 days with a cousin and some buddies who are studying abroad. He booked his flights on a whim, and while we were chatting, he casually remarked, “I’m flying to Spain this weekend.” Some moms might be upset by not being told earlier about a child’s upcoming transatlantic trip, but I rejoiced that my boy was heading off on an adventure.
A few days after arriving in Spain, Michael let us know he planned to “get in a ring with a bull” at a festival in Zaragoza. What exactly that meant I didn’t know, but after pleading for his safety in prayer, I fell soundly asleep. Early the next morning, I awoke to a text: “Bull-1, Michael-0.” That was Michael’s way of saying he took a hit from the bull. Eager to speak to our son, my husband and I were quite relieved when he explained that he was fine. He was bruised and sore, but entirely pumped up about his experience.
His cousin sent us a video and photos from a Zaragoza news site so we could watch Michael’s feat with our own eyes. My stomach lurched as I saw my own son taunting a bull, then turning to run, only to be knocked over, head-butted, and stepped on by the bull. Yikes! Thankfully, I also saw him pop up from the ground and practically leap over the enclosure and into the stands.
After initially cringing, I had to laugh. This young man who’s stared suffering in the face for most of his life would be the one to stare down a bull and live to tell the tale. When I asked what gave him the audacious idea to taunt the bull, he replied, “You can’t live in fear of what could happen to you.”
Why my son is so fearless we don’t know. Did he get it from me? Is it because his frontal cortex isn’t fully developed? Or is it his familiarity with physical affliction and a personal determination to not let pain stop him from grabbing life by the horns? I’m willing to bet it’s all of the above.
Having Fabry disease hasn’t stopped my kids from being extraordinarily adventurous, sometimes foolhardy, and always undaunted. The twins and their teenage sister have all had rich life experiences accompanied by neuropathy, gastrointestinal pain, and other suffering. The three of them have taught me so much about taking the hand you’re dealt and running with it. They haven’t let Fabry keep them down.
I’m sure many Fabry patients have stories of excitement and adventure (maybe not as crazy as facing a bull) that came at a great cost. So here’s to every courageous sufferer who faces Fabry every day, takes some hits, and gets back up with gusto!
Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Fabry disease.
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Catherine Prady
I've just been diagnosed with Fabry at age 37, having had symptoms since age 10. I have 5 kids, ages 4 to 13, and they're going in for testing in the new year. Hearing how your children are dealing with the disease has given me a little more hope for my own, so thank you!