There are moments in life when one path ends and another begins—and for our family, that turning point was Julian.
Julian is 9 years old and has a rare genetic condition caused by a variant in the KDM5C gene—a variant so uncommon that fewer than 300 people worldwide are known to have it. It’s a diagnosis that took us more than four years of tests, doctors, and uncertainty to find. But more than that, it’s a diagnosis that finally gave us answers—and a community.
Genetic variants that disrupt the KDM5C gene result in an array of developmental, behavioral, and cognitive changes. For Julian, that means a lot of everyday things take incredible effort. He is nonspeaking and uses ASL and AAC to communicate. He struggles with muscle control and balance. He’s still learning the basics—walking down stairs, using the potty, staying focused for more than a moment. He wears pull-ups. He sometimes falls for no reason. He gets overwhelmed easily, especially in new places or with too much noise. Group singing? Not his thing.
But give him a quiet corner and some alphabet magnets, and he’s in his happy place. He could spend hours immersed in numbers and calendars, completely content. He’s introverted but affectionate, especially with the people he knows and trusts. His world may look different, but it’s full of joy if you know where to look.
That’s part of what this journey has taught us. It’s not just about diagnoses or delays or milestones that haven’t been reached yet. It’s about celebrating different victories. Slower victories. Victories that come with years of therapy, repetition, and patience. Like the day he made it down the stairs without help. The first time he told me “You will be quiet” on his iPad. :) That first smile on his beloved therapy horse. The quiet victories that come after months or years of persistence and love.
We named this race team Julian’s Journey because that’s what this is: a journey. One filled with highs and lows, fear and faith, questions and quiet miracles. And we’re not walking it alone.
From grandparents who’ve stepped in with constant love, to therapists who’ve helped Julian find his strengths, to friends and neighbors who’ve cheered us on from the sidelines—this team already exists. You’re part of it. Whether you’ve known Julian his whole life or are just hearing about KDM5C for the first time, we invite you to walk with us.
On Saturday, September 27, we’ll be gathering at our home in Huntersville, NC for a relaxed 1-mile walk at 9am, followed by brunch. If you're local, we’d love to see you. If you're far away, you can join from anywhere. Walk, run, roll, skip, dance—move however you want. Just like Julian’s, it's your race. At your pace. Wear your T-shirt, share a photo, and tag @KARESFoundation to show your support.
By joining Julian’s Journey, you're not just showing up for one little boy. You’re helping to fund vital research for a genetic disorder that’s just beginning to be understood. You're fueling the mission of the KARES Foundation, a 501(c)(3) nonprofit dedicated to research, advocacy, education, and support for all families affected by KDM5C variants. You're helping us shorten the diagnostic odyssey for other families. You're reminding us that we’re not alone.
Register by September 5 to get your race T-shirt and swag. After that date, we won’t be able to accept more orders so we have time to pack and ship.
Julian may never run a race on his own—but with your help, his journey is moving forward. Every mile and every donation provides hope for a community that desperately needs it. At a time when scientific progress and the rights of children with disabilities face growing challenges, we’re making the road ahead just a little bit easier for the next family who receives a KDM5C diagnosis.
