Completing college and living full lives with Fabry disease
A campus visit prompts reflection on diagnosis, treatments, and success
Two friends and I recently left the warmth of Texas to brave the snow and freezing temperatures of Kansas, where the three of us have sons at Benedictine College. The campus hosts a mother-son (and father-daughter) event, with a cocktail hour, a fine dinner, and a dance. It was a fantastic opportunity to spend quality time with my sons Anthony and Dominic, and I loved every minute.
Spending eight hours behind the wheel each way afforded me lots of time for reflection — specifically on my sons and their lives in college. Anthony is a senior business accounting major while Dominic is a junior in business management. Soon they’ll be stepping into the world as adults, and as cliché as it sounds, it seems like just yesterday that they were taking their first wobbly steps.
Anthony was the first in my family to be diagnosed with Fabry disease. In many of my columns, I’ve referenced that fateful day in 2019, when the heavy news of this rare disease landed on his broad, young shoulders.
Males with a classic case of Fabry don’t produce an important enzyme nicknamed alpha-Gal A — for alpha-galactosidase A. Alpha-Gal’s job is to break down globotriaosylceramide (Gb3), which is then taken out of the cell as waste. Without alpha-Gal, the buildup of Gb3 begins before birth and continues through a person’s life, eventually leading to multisystemic degeneration and organ failure.
To free their bodies of Gb3 buildup, Anthony (and his twin, Michael, who also has Fabry and attends another college) needed to begin enzyme replacement therapy (ERT) as soon as possible. That doesn’t repair existing damage, but if it does its job, it should slow the disease’s progression and extend life expectancy.
The symptoms were burdensome already; the treatment sounded incredibly daunting; the progressive nature of Fabry was frightening; and the dermatologist who diagnosed them enumerated restrictions on the twins’ life that he believed necessary until specialists suggested otherwise. But we chose to get ERT.
Anthony’s journey
We had no idea what the rest of high school would look like for Anthony. We had no idea how inhibitory his treatment regimen would be. We questioned whether Anthony would be able to live a “normal” life.
From left, Dominic, Anthony, and Susanna VanVickle at O’Malley’s 1842 Pub in Weston, Missouri. (Courtesy of Susanna VanVickle)
Fast-forward five and a half years, and I was driving to spend time in Atchison, Kansas, where Anthony’s been thriving for almost four years now. When I arrived where I was staying, Anthony walked over and joined me in my room for a hot cup of coffee before Dominic picked us up for dinner with a group of college friends and their parents.
After dinner, Anthony insisted on taking us out to a favorite hangout, O’Malley’s 1842 Pub. Throughout the night, it seemed that every college kid or parent I met had something wonderful to say about my son Anthony. I delighted in the compliments as well as the live Irish music, which reverberated off the stone walls of the underground brewery-turned-tavern.
The next day, when Anthony stopped over again for coffee, he invited me to take a walk with him in the snow. As we walked along the river and through the town, Anthony shared about memories he’s made, friends that he’ll keep for a lifetime, opportunities for the upcoming year, hopes, dreams, big decisions, and hesitations. What a gift!
That heart-to-heart was priceless. Additionally, his words shed light on that question from almost six years ago. Anthony has been able to live a “normal” life.
The restrictions he faced after diagnosis didn’t handcuff him because we learned so much more about Fabry disease. Anthony was free to live his fullest life despite his condition. At times his body has put limits on what he can do (particularly in regard to sports, heat exposure, and diet), but he’s learned when he has to listen to his body and when he can push himself.
From left, Dominic, Susanna, and Anthony enjoy a mother-son event at Benedictine College in Atchison, Kansas. (Courtesy of Susanna VanVickle)
The mother-son event was elegant and fun. I thoroughly enjoyed my time with both my sons, but when I think of Anthony, I want to share with the Fabry disease community the hope that welled up in me.
His rare disease has undoubtedly been a source of suffering, but he’s found within himself a great strength that sets him apart. He’s noticed for his unsolicited acts of service, his intelligence, his chivalry, his masculinity, and his virtue. He’s made his mama so proud!
Today, he looks forward to college graduation and beyond. And while Fabry is intrinsically written into Anthony’s future, his is a future ripe with possibility and abundant life.
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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