Levi Bensen is remembered for
his big smile and joy through hardship. Photo: Dan Bot
Author Dan Bot shares messages of courage and embracing differences.
Dan Bot didn’t set out to be an author. But after losing his stepson, Levi Bensen, Dan knew the endless strength and optimism Levi displayed was a lesson that needed to be shared. Last November, Dan’s children’s book, Levi Lifts Off, was published by Begin Again Books with illustrations by Mae Elizabeth Acuña.
Shortly before his 4th birthday, Levi was diagnosed with Pantothenate Kinase-Associated Neurodegeneration (PKAN), a rare disease where toxic levels of iron accumulate in the brain. The disease took away Levi’s ability to feed himself, speak and walk. But the disease didn’t define Levi; his interests in shows like Blippi and Cocomelon, his love for the family dog and experience playing T-ball were big parts of who Levi was. In Levi Lifts Off, Dan focuses on the beauty in differences and sends a message that children with disabilities shouldn’t be treated differently.
In the book, Levi is portrayed as a superhero. From special glasses that give him super vision to a high-powered wheelchair that helps him get around, the things that made Levi different from other children are the same things that make him special in Levi Lifts Off. At the end of the book, Levi gains his greatest superpower. He grows wings and soars around the Earth and up to heaven. “It’s really about honoring Levi and how much I was able to learn from him,” Dan says. “From a more tangible standpoint, I wanted to share characteristics that Levi or other children with disabilities have in common with a real superhero.”
Dan Bot’s book Levi Lifts Off was published in late 2025. Photo: Chris Emeott
By the time Dan met Levi, the disease had taken away Levi’s ability to speak; he communicated through facial expressions, pointing, shaking his head and laughter. Dan hopes that Levi’s positivity through hardship will inspire readers to shift their mindset. Falling and skinning a knee might be a terrible day for an able-bodied child, but to Levi, it would have been the best day ever—because that meant he could walk. It’s a lesson Dan shares when he reads the book at elementary schools and libraries.
Before writing Levi Lifts Off, Dan discussed the idea with his wife, Katie Bot, and Levi’s father, Jeremy Bensen. Both were extremely supportive of the idea. “After experiencing a loss like this, there’s no script on how to deal with it,” Dan says, adding that he found strength in writing Levi’s story. “In the years following, I wanted to honor Levi, support families who have gone through this and raise money to eradicate childhood disease.”
All profits from the book are donated to a variety of charities, including Make-A-Wish and the National Brain Iron Accumulation Disability Association, which funds research for a multitude of rare diseases, including PKAN.
Levi’s grandmother, White Bear Lake resident Pam Tschida, shares that the book has supported the family’s journey to healing. The illustrations include pieces of Levi’s life that those who are close to him will recognize. “I think the book itself is a gift,” Tschida says through tears. “It’s [Levi]. It is him.”
Levi Lifts Off is a reminder that all children are a gift—especially those with special needs. “If you look at the bravery and what they have to endure every day, it is commendable,” Dan says. “We should start looking at them more like the superheroes they are.”
For more information and to purchase a copy of Levi Lifts Off, visit beginagainbooksandgifts.com.
