Despite only having 18 months with him, Christian Ragonesi and Victoria Zainey raised the most resilient, determined little boy they ever met. Doctors told the parents their son hardly had a chance of surviving his first week of life. But he defied the odds and is now helping other Riley patients.
By: Courtney Finafrock, social media senior videographer, cfinafrock@iuhealth.org
Kolton Ragonesi was born on December 8, 2024, weighing merely 1 pound and 4.3 ounces. His parents, Victoria Zainey and Christian Ragonesi, will never forget the pure joy his smile brought not only their family but everyone who shared a room with Kolton.
"Even when he had bad days, he would always smile and laugh," Ragonesi said. "Me and Tori, we always used to do this thing where we kissed him on his cheeks at the same time. He would always let out a big smile where you could see his teethers and everything, then he'd lift his legs up and grab them and hold them. Right before he took his last breath we did it and he let out on last big smile. He passed away right after that last big smile."
His mom remembers that day, June 13, 2026, and how uncomfortable he was leading up to that final grin.
"You could just see how uncomfortable he was all day long and then after the kiss, he like let go," Zainey said.
Second only to the pain of losing Kolton was the unexpected grief the parents described related to no longer needing to spend time at Riley Hospital. For 540 days, the family spent as much time as possible with their young son. To help ease the pain, Zainey said they started Kolton's Klubhouse, a foundation to help other families of medically complex children afford gifts at Christmas time.
"It mends a void," Zainey explained. "It keeps me busy to where I'm doing something that has to do with Kolton still; This is just a different version of Kolton."
Kolton's Klubhouse hosted its first ever golf outing on Saturday, October 10, to raise money for the holidays, alongside donations collected through the foundation's website.
"Then that way we can buy presents meant for that child specifically with any kind of medical condition, whether it's a trach, whether it's a vent, whether they have cancer, it doesn't matter what it is, not only do we want to support the child that's in the hospital, but the family as well," Zainey explained. "Do you have the right bed; do you have the right accessories at home that could be gifted as Christmas presents? When Kolton came home this last time, he was way too big for a crib."
This first Christmas, Kolton's mom and dad are focused on supporting one Riley family, but they have goals of helping many more.
"We know that he would be proud of us, and we know that Kolton would want us to help other kids," Ragonesi said.
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