LAKE ST LOUIS, Mo. — In the world of photography, every click of the shutter tells a story. But for Kaylee DiCicco, the tales behind her lens run deeper than most can see.
We first met Kaylee as a bright-eyed participant at the Mike Bush Baseball Camp for the Deaf, where she caught the eye of Hall of Famer Lou Brock. Little did we know then that her hearing impairment was just the opening chapter of a much more complex narrative.
At 14, Kaylee's life took an unexpected turn when she was diagnosed with Chiari malformation, a condition where part of the brain is pushed into the spinal canal due to a small or misshapen skull.
"Nothing I can't handle," Kaylee recalls thinking. "That's all I kept thinking. There's nothing we can't handle."
But the reality of Chiari hit hard. "I eventually got to the point where it felt like there was a giant bowling ball in the back of my head, just pulling me back all the time. Just tons of tension, tons of weight," Kaylee describes.
Kaylee's journey with Chiari, however, wasn't a solo expedition. Her mother, Diana Cameron, soon found herself navigating the same uncharted territory.
"I got a headache so severe. I thought I was going to die and it would never go away," Diana remembers.
Through a gauntlet of surgeries and relentless pain, this mother-daughter duo discovered a new purpose - to be a beacon for others lost in the fog of this diagnosis. "Because no one wants to be alone. No one wants to sit and think it's just me," Diana explains.
Today, Kaylee and Diana weave a tapestry of support, creating a community where those facing the same invisible giant never walk alone. Their efforts have become an anchor for people like Julia Keesaman, whose daughter Amber also lives with Chiari and other challenges.
"She is a lifeline to me every day," Julia says of Diana.
Five-year-old Amber is rewriting the rulebook of what's possible.
"She is capable of learning. She is talking. She can't stand up and walk on her own, but she can get herself around in that wheelchair," Julia proudly shares.
For Kaylee, now a professional photographer, each shot captures more than just an image. She photographs echoes of her own story, developed in shared adversity. "It is a very isolating disease, so you just need to make sure you have your own little, your own little crew there supporting you," Kaylee advises.
Through their work, Kaylee and Diana are making the invisible visible, bringing resilience and hope into focus.
"By doing that, we can hopefully get this cured or at least a little bit better for us, Chiarians, in the future," Kaylee says with determination.
Their mission continues with the upcoming Conquer Chiari Walk on Saturday, Sept. 21 at Boulevard Park in Lake St. Louis. To join their journey and register for the walk, visit walk.conquerchiari.org and click on "sites" and "Lake St. Louis."
In a world where the most profound struggles often go unseen, Kaylee and Diana are developing a new perspective - one snapshot at a time.
Making a Difference
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