Kenny Muñoz doesn’t dwell on the hardest months. When he thinks of his sister Vanessa, he thinks of her dancing, laughing, and holding court at a rooftop party — the kind of person who’d have the best time in the room without a single drink in her hand, often volunteering as the designated driver.
“She was a very social person. She just knew everybody, even back in Mexico,” Kenny says. “She could talk to anybody, could be hardheaded at times, but a hard worker and smarter than she saw herself to be.”
Vanessa was a momma bear to her two children, Alessandro and Alexa, and a secretary for the social workers at Addison Trail High School — a job she’d just started. She was always picking up small, thoughtful gifts for her brother, like a Game of Thrones book she spotted at the store. And she was getting into running. Kenny, 42, had a plan: once she healed her knee, he’d take her to the gym, get her ready for a 5K.
That plan never came to be.
In October 2022, Vanessa called Kenny from the parking lot of a mall. She was crying. A doctor had confirmed she had some form of motor neuron disease. Kenny did some research and understood the gravity of what his sister was facing. It wasn’t until February 2023 that she had an official diagnosis, an all-too-common occurrence with ALS. By August, she was gone.
“In a week she could go from walking to not walking,” Kenny says. “Week by week her condition changed.”
Kenny, his brother Ruben, their parents, and sister-in-law Roberta became Vanessa’s caregivers. Ruben and his wife came in from the city each morning. Their mother cooked; their father slept in Vanessa’s room after night shifts. Kenny’s priority before work each day was making sure his sister could make it to the bathroom. Even after her diagnosis, Vanessa kept having family drive her to work until she couldn’t anymore.
“My brother knew she was just waiting for her daughter Alexa’s quinceañera,” Kenny says. “She smiled — you could kind of tell that’s what she was holding on for.”
Vanessa passed away in August 2023, about a month before the family’s first ALS Walk for Life. They’d formed Vanny’s Village hoping to walk with her beside them. Instead, they walked in her memory.
“We knew we had to do it. We’re not going to shy away from these things,” Kenny says. “The kids were very much, ‘We’re going to go.’ It became an important walk for us. It still is.”
This October will mark the fourth consecutive year Vanny’s Village has walked, and the team remains a family affair — cousins from out of state, extended relatives, even a nephew’s girlfriend’s family. Afterward, they keep a tradition: dinner at Parlor Pizza, one of Vanessa’s favorite spots, the same patio Kenny introduced her to years ago.
“It’s a date to celebrate her and get to see all the lives that she touched,” Kenny says. “Even if they only met her a few times, she made enough of an impression that they keep coming out.”
Last year, Pope Leo XIV offered a blessing at the Walk. For a Catholic family like theirs, it meant everything — Kenny is sure that Vanessa would have loved it. He later traveled to Rome and did many of the things he’d imagined the two of them doing together.
Now, Kenny is training for his first marathon — the 2026 Bank of America Chicago Marathon with Team Race for ALS. He loved running but never committed to the distance. “I’m not getting any younger,” he says. “I want to do this while I can.
He also found a meaningful way to honor Vanessa’s legacy: after her estate was settled, he donated the remaining funds from the GoFundMe that Vanessa’s coworker had established, splitting them between the Les Turner ALS Foundation and Team Gleason.
Throughout Vanessa’s illness, the Les Turner ALS Foundation, and her support services coordinator Easton Stevenson, LCSW, FT, were a constant presence — helping the family advocate for equipment, coordinating hospice care, and offering empathy at every turn. “From the first moment that we knew it was ALS, they were there and ready to help you fight this thing,” Kenny says. “We felt comfortable, which was huge.”
When asked what he wants people to understand about ALS, Kenny doesn’t hesitate. It’s the speed. It’s the pressure on families making impossible decisions under enormous stress. It’s the pain of watching someone you love suffer — and the guilt of wanting it to end, not because you don’t want to care for them, but because you can’t bear what they’re going through.
“It’s a hell of a challenge and it impacts a lot of lives,” he says. “We made the choice to put our lives on pause to deal with this. That isn’t a luxury everyone gets.”
What carried him through was choosing to look at the positive — and refusing to let grief sour his life. He doesn’t picture Vanessa in her final months in a wheelchair. He pictures her dancing. He remembers being her comfort blanket, watching her favorite shows together, making light of a situation that offered so little light.
His advice to anyone who wants to support a family facing ALS is simple: just show up. You don’t need the right words. You don’t need to fix anything.
“Just showing up and wanting to spend time is the most critical piece,” Kenny says.
