Our Champions
This is my ALS: A love story. It’s about my mom, Merp.
For what my mom lacked in stature, she more than made up for with her prolific spirit. Mom to me, Mary Pat to many, and “Merp” to her own dad stood just 5 foot 2—that may have had something to do with her penchant for wearing high heels. When she shared her ALS diagnosis with me in 2015, it was one of the first things she said: “I’m still me, I’m still wearing my heels every day”.
Never one to be intimidated, it came as no surprise to me that her response to receiving one of the most harrowing diagnoses possible was to—quite literally—dig her heels in. An ICU nurse, a mother of 5 (including twins!), a proud New Yorker, and an oldest sister, there are few people in the world with more savvy, grit, and capacity for love. More than anything, she loved to love. She tenderly cared for patients of all ages, aided her mother in managing a boisterous household of 7 children, and eventually raised her 3 sons and 2 daughters to dream big, and then bigger.
It was mom who encouraged a finger swipe of chocolate frosting before the cake had been cut on your birthday. It was mom who danced on a dining room chair while Christmas music rippled through the house. It was mom who quietly giggled with you in the dim light of the kitchen over a bag of Ruffles and French onion dip at midnight. It was mom, with her enviable shoe collection, who instilled in me a deep appreciation for pedicures from a very young age. I knew that one day I’d have big, and possibly open-toed, shoes to fill.
On July 3rd, 2025, the day before the 8th anniversary of my mom’s passing, I welcomed my own daughter, Merritt Patrice, “Merp”, to the world. Since that day, I’ve enjoyed the gift of seeing the world through my mom’s eyes—the gift of the profound connection between mother and daughter.
Through the experience of becoming a mother myself, I’d grown closer to my own mom despite the celestial distance we share. I understand, now, just how deep and wide and tall mom loved.
With that same, big love, I found myself wanting to return to my mom at least a morsel of what she gave to me. In December of 2025, I joined the Augie’s Quest team with my own personal mission of creating a far more hopeful future for people like my mom. I dream of a life where I can still hear the clack of her heels on the kitchen tile, a life where she clasps Merritt’s hand in hers for that swipe of chocolate frosting. I dream that someday, somewhere, another person living with ALS won’t be forced to box up their high heels and forfeit the chair dancing. That might be lofty, but I’ve got 6 inches on my mom, and what a big, huge life she lived.
-Sydney Bonham
