Straight Paths With Crooked Lines — Susanna VanVickle

As a columnist for over three years, I have chronicled my family’s journey with Fabry disease by focusing on the experiences of three of my five children who inherited the Fabry mutation from me: twins Michael and Anthony, and Marisa. For this column, I wanted to give a…

The month of January tends to make people bloom with optimism and fresh resolve to achieve their wellness goals. However, the “take control of your health” message doesn’t resonate with people with Fabry disease. This time of year is a reminder of how much is outside of a Fabry…

We were excited the first time our patient education liaison from pharmaceutical company Sanofi offered to take us out to a fancy restaurant. Several members of my family had just been diagnosed with Fabry disease, and we planned to talk about the condition over dinner. As a family of…

Racing down a hill I travel daily, not realizing that my car was going almost as fast as my mind, I caught sight of police lights in my rearview mirror. What?! Not a ticket! Could my day get any worse? That was the day we were told that my 9-year-old…

Sitting by the stone hearth at La Madeleine restaurant, two friends and I vulnerably shared our thoughts over soup and salad. The three of us savor life updates, laughter, and counsel. We have many things in common: We are committed Christian women, each with four sons and a daughter. We…

Picture this: I was soaking in the panorama of emerald mountain peaks framing the blue waters of Lake Amatitlán in Guatemala, where my friend and her groom were kicking off their wedding festivities with friends, food, and music. The event was exceptional, but I was feeling off. An unease had…

In March, I was blessed to go on a mission with my 81-year-old mother, my 14-year-old daughter, Marisa, and two other moms and their girls. We arrived in the stunningly beautiful Costa Rica and spent a week in a small village nestled in the mountains, where we visited the homebound,…

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…

My son Anthony, who’s a senior in college majoring in accounting, recently told me, “I would’ve chosen to go to medical school if I didn’t think I had a short life expectancy.” His words stopped me in my tracks. Anthony is one of my three children who are living…