For nearly 15 years, the heat, rhythm, and camaraderie of Chicago’s kitchens shaped Kate Milashus’s world. After putting herself through culinary school at 28 and landing her first chef position at 30, she found a home among pastry bags, ovens, and the exacting craft of desserts. “I loved the artistry and the precision of baking,” she says. And when people ask her favorite dessert? “It’s an easy answer: my cheesecake.”
That world changed in late 2021, when unusual weakness in her left hand during a Turkey Trot set her on a months-long search for answers. On September 14, 2022, Kate received the diagnosis that would transform life for her and her partner, Sean: ALS.
Today, Kate can no longer cook—but she hasn’t lost her creative instincts. She still guides Sean through recipes and techniques, drawing from years of experience. “I’m still able to help create,” she says. And her connection to the world around her, though changed, remains rich. Through assistive technology enabled by the Les Turner ALS Foundation and Shirley Ryan AbilityLab, Kate uses voice commands on a phone mounted at her chest to text, read, shop, and stay engaged with friends.
ALS has brought unexpected challenges—some small, some profound. “I didn’t expect things like the burning tears, buildup of skin on my fingers and feet, or even not being able to sneeze properly,” she shares. Yet the journey has also revealed deep wells of community and care. “I have been blessed and surprised by so much love and help from Les Turner, especially Rochelle, our Support Services Coordinator, and others. We have been blessed with everything we need.”
For Sean, caregiving has become both an act of devotion and a daily test of adaptability. “Our love for each other has strengthened during this journey,” he says. “I get angry that Kate has ALS, but her strength inspires me.”
With the support of Northwestern Medicine, Shirley Ryan, Lightways Hospice, and the Les Turner ALS Foundation—whose team helped secure essential equipment long before Kate and Sean knew they’d need it—they have learned to stay ahead of ALS’s relentless pace.
Help has come from family, friends, neighbors, and the ALS community. But Kate also finds joy in her own rituals—sending greeting cards, welcoming visitors, celebrating holidays, cheering for the Chicago Bears and the University of Illinois Fighting Illini. “I love keeping connected to people,” she says.
Through countless challenges—from learning to use a Hoyer lift to managing breathing changes with multiple BiPAP machines—Sean and Kate have learned resilience through preparation, partnership, and grace. “Stay strong,” Sean says to others on this path. “Try to stay ahead of the game with equipment. Be patient as you adapt. We were so clueless at first, but with help, we learned—and now we’ve made more than 1,000 bathroom trips using the Hoyer.”
As they look ahead, their focus remains clear. “Our priority has always been Kate’s comfort,” Sean says. “We will continue to adapt to the new challenges ALS brings. We hope places like Les Turner get the appreciation they deserve—they have given us hope for three years.”
