Lucy

It was an evening Michael and Emily would never forget. Michael stepped out of the bathroom to find his wife with tears streaming down her face. After months of searching for answers to their daughter’s delays, they both had one thought: “Please let it be anything but Rett syndrome.”

St. Louis natives and high school sweethearts, Michael and Emily welcomed Lucy into the world on April 29, 2023. They now describe her as a “threenager”: silly, strong‑willed, full of laughter, and the center of their world.

When Lucy was around six months old, her parents noticed she was leaning to one side. What began as torticollis soon raised deeper concerns as Lucy fell behind her peers developmentally.

“If a child develops at 10 miles per hour,” Michael says, “Lucy was developing at 2.”

As a pediatric occupational therapist, Emily trusted her instincts. Autism was discussed, but it didn’t fully explain Lucy’s challenges. “I was in advocacy mode,” Emily recalls. “Instead of just getting to be her mom, I was constantly problem solving and ruling things out.” Eventually, genetic testing brought clarity: Lucy was diagnosed with Rett syndrome in January 2025.

Though life changing, the diagnosis gave the family direction. With therapy underway and a clearer path forward, everyday moments returned to focus. “We realized we could only control what we could control,” Michael says. That summer, memories came before milestones. They enjoyed trips to the park, going to the zoo, and exploring the aquarium as a family.

Lucy had already begun early intervention services and attended the Rett syndrome clinic in St. Louis, but her care team recommended more intensive support. One option immediately stood out: Ranken Jordan Pediatric Bridge Hospital.

Emily already knew of Ranken Jordan. A high school job‑shadowing experience there helped shape her career choice. Now, it felt like it was coming full circle: for Lucy and their entire family.

Lucy began intensive therapy at Ranken Jordan in the summer of 2025, and her parents immediately felt the difference. “At Ranken Jordan, everyone presumed competence,” Michael says. “They know every Rett story is different, and they treat Lucy a one in one, not just as her diagnosis.”

Through therapy, Lucy began using an eye‑gaze communication system, allowing her big personality to shine. While Rett syndrome is progressive and brings regression, Emily and Michael feel supported knowing Lucy is understood. That trust grew even deeper during moments of respite care and unexpected kindness. “It wasn’t just about Lucy,” Emily says. “Ranken Jordan goes the extra step every time.”

“This journey can be incredibly lonely,” Michael adds. “In some places, you feel like just another family or a credit card swipe, but not at Ranken Jordan, you’re part of a community.”

Looking ahead, their hopes for Lucy are what any parent would want: access, opportunity, and people who see her potential. “She knows what’s going on,” Emily says. “And I wish the rest of the world could see that.”

And so, they move forward. One swing, one zoo trip, and one word at a time, guided by hope and belief in Lucy’s abilities.