Entering kindergarten marks a memorable moment in childhood, one of kids figuring out how to communicate and express their personalities.
Each student’s experience is unique. One kindergartener at Glacier Ridge Elementary School – Lola “Lo” Kaufman – is mastering the dance to her own beat.
Sara Kear
From diagnosis to direction
Lo has a rare peroxisomal disorder called Zellweger Spectrum Disorder, which affects her cognitive functions, bones, muscles and organs such as her kidneys and liver.
After Lo was born, her parents, Jake Kaufman and Sara Kear, noticed some unusual characteristics appearing and sought to understand them. Lo’s diagnosis came about two weeks ahead of her first birthday.
She completed her year of preschool at The Ohio State University’s Nisonger Center, a facility meant to care for children with similar challenges. There, she steadily progressed and was able to make choices on her own and move her body.
By the fall of 2025, Lo was prepared to manage her disorder in a more traditional school setting for kids her age. So, she took the chance to step foot in her first public school classroom.
In the classroom
Lo splits her day between her kindergarten classroom and a specialized learning center with her intervention specialist, Alyssa Covey. Covey befriended Lo in preschool and now designs individualized educational plans for her.
Sara Kear
“The biggest thing we’ve been working on is communicating her wants, needs and opinions,” Covey says. “We’ve been giving her opportunities to use her voice.”
At school, Lo gets around with a gait trainer and other helpful equipment, which her dad says she enjoys because, “it gives her some freedom to learn and to explore the world.”
She fits right in with her classmates, yet also experiments with buttons and switches to trigger lamps, computer games and more as modes of communication. Lo also participates with her class in daily instruction curated to improve decision-making skills.
She loves to explore unique things, such as the texture of the classroom’s squeaky fabric steps, a vibrating pillow and an indoor bucket swing.
On the recess playground, Lo brings the fun. With the speaker on the back of her gait trainer, the young fan and her friends jam out to the music of Taylor Swift. Lo’s classmates appreciate her so much that their teacher established a rotating schedule for them to help and play with her.
“It’s a daily privilege for those kids,” Covey says. “She’s impacted them by creating this classroom culture of kindness and acceptance, and she’s given them awareness.”
Sara Kear
Life with Lo
Back at home, Lo enjoys spa days, and her younger brother, Miller, staying out of her space. She also inherited her mom’s taste for spicy foods and usually eats a few eggs with salsa for breakfast.
By stirring meals over the stove, accessing the fridge and otherwise assisting with chores around the house, Lo practices her mobility and independence.
Since Lo’s vision and hearing capacities are limited, she often touches and taps with her hands on faces and necks to speak her mind to her family. Most of all, Lo has an affinity for sounds, and often dances to pop songs such as her all-time favorite, “Look What You Made Me Do” by Taylor Swift.
Her equipment empowers her both at home and in school. For instance, a couple months after receiving her cochlear implant, her parents watched Lo laughing with her friends at school for the first time.
“It’s absolutely been a very life-giving element for Lo, so we’re thankful we did the (cochlear) surgery,” Kear says.
It takes a village
Sara Kear
Kaufman and Kear have raised Lo while publicly advocating for a clinical research trial into a potential method of therapy for the disorder. Throughout their mission to research Zellweger, her parents have contributed to global discussions and collaborated with important researchers.
“It’s very challenging to fund that research. It’s challenging to commit to that long term,” Kaufman says. “So, it’s been really valuable for us to see their level of passion and the sacrifices they make for us to do this sort of work.”
Together, they launched the “Hope with Lo” 5K race and a t-shirt that many of the teachers at Glacier Ridge wore in solidarity to support Zellweger awareness.
Through their work, the support of their community and their event, Kaufman and Kear have raised more than $200,000 for research so far.
“The event itself has been a really fun day of people showing up, supporting one another and celebrating Lo and other kiddos like her,” Kaufman says.
“This was a way for us to share more about Lo and how amazing she is, and we really have felt our community rally around us,” Kear adds.
Lo’s parents sometimes face emotions and challenges while caring for her disorder – but nothing changes their love for her. Her parents are confident that as Lo continues to grow, so will the research into Zellweger, as well as the inspirational effect she has on the world around her.
Evan Che Stefanik is an editorial assistant at CityScene Media Group. Feedback is welcome at feedback@cityscenemediagroup.com.
