What sparked the idea for this film?
We’ve known Ben Kjar for many years and always believed his story had the potential to make a remarkable film. In 2023, when a small production company approached us to pitch low-budget documentary ideas, Ben’s story immediately came to mind. We were so passionate about it that it was the only idea we presented.
Although we didn’t end up moving forward with that production company, we couldn’t let go of the idea. We realized the strength of Ben’s story made it worth pursuing on our own. Thankfully, as we dove deeper, his journey proved to be even more inspiring and impactful than we ever imagined.
How long did the film take to produce?
The initial idea for the film came when we first met Ben nearly 35 years ago. While the timing wasn’t then right, when the opportunity presented itself in 2023, we jumped at the chance.
Production began with three months of pre-production and research, leading up to Ben’s interview in August 2023. Over the following year, we conducted more than 40 interviews to help tell Ben’s story. While many of these interviews didn’t make the final cut, the insights they provided were invaluable to shaping the documentary.
Post-production wrapped in January 2025, bringing the total production timeline to just under two years.
Where did you find the actor that plays “young Ben?”
We conducted a nearly six-month nationwide search for a blonde boy with Crouzon Syndrome. With the help of the Children’s Craniofacial Association, we searched far and wide but ultimately came up empty-handed. We were beginning to explore alternative ways to approach our recreations when, just a couple of months before primary filming began, something incredible happened.
Ben received a phone call from some young parents who had heard about Ben through social media. They wanted to meet him. They lived less than an hour away and had a 5-year-old son with Crouzon Syndrome. When Ben met Colton Fielding, he couldn’t believe it—he was a perfect match, bearing an uncanny resemblance to a young Ben. Despite having no prior acting experience, Colton stepped into the role effortlessly and proved to be an absolute rock star from the very first day on set!
Did you take any precautions when filming tough scenes where young actors are bullied?
Some of the most challenging moments in Ben’s life are depicted in the film, many of which Colton reenacted. We were fully aware that placing a 5-year-old in scenarios where, for instance, an adult yells at him or makes fun of him, could be emotionally harmful.
Colton had already faced his share of tough experiences, even at such a young age, and we were determined not to make him relive those moments on set. To protect him, we used a thoughtful approach: during difficult scenes, the actors would say harmless nonsense words to Colton instead of the actual hurtful dialogue. Once Colton was out of earshot, we reshot the scenes without him, allowing the actors to deliver the authentic lines that reflected Ben’s experiences growing up. This way, we could remain true to Ben’s story while ensuring Colton’s emotional well-being was safeguarded.
What do you hope people get from watching your film?
Our hope is that viewers leave the film with a renewed sense of resilience and purpose. Ben’s journey to embrace his unique identity reminds us that our greatest challenges can become our greatest strengths. Through his story, we want audiences to feel empowered to stand out, celebrate their individuality, and recognize their ability to inspire others—no matter the obstacles they face.
Ultimately, we hope that the film entertains, uplifts and inspires.
Is there anything I can do to help people with similar conditions as Ben’s?
Yes! The Children’s Craniofacial Association is a terrific organization that strives to empower and give hope to individuals and families affected by facial differences. Learn how to get involved at ccakids.org.