Katie’s Story

Posted On: Oct 18, 2013

“You can’t diagnose a miracle,” says Katie’s mom, Edwina, when describing her extraordinary daughter. Katie’s medical journey is unique and, in many ways, still a mystery.

Healthy, pink and kicking at birth, Katie suddenly stopped breathing. Two days later, doctors told Edwina the outcome was grim. “Her brain scans were flat, indicating no activity,” remembers Edwina. “Those were tough days.”

But two days after that, Katie woke up—and, with her family’s help, her brain began the slow process of healing. “We read to her, talked to her, did everything we could to stimulate her,” says Edwina. “Her brain began to rewire itself.”  

As Katie continued her remarkable recovery, it became clear that she faced physical limitations. She was soon diagnosed with cerebral palsy, a form of brain damage that prevents her from moving as typically developing children do.  Though every child’s cerebral palsy results in different symptoms, Katie’s is especially unusual—it keeps her body in constant motion.

“Katie’s body is a mix of multiple movement disorders conflicting constantly with one another,” explains Edwina. “It’s like nothing doctors have seen before.”   

Katie has been coming to Gillette Children’s Specialty Healthcare for most of her life, where evaluation in the hospital’s Center for Gait and Motion Analysis has helped doctors better understand her unique combination of movement problems. Treatments and therapies have improved her muscle tone and strength, helping her gain independence. 

“Katie used to have to crawl around our home because her muscles were tight and painful,” says Edwina. “Today, my daughter can walk from room to room without fear of falling. It’s a blessing!”  

She adds that Gillette has been equally beneficial to Katie’s self-confidence. “We appreciate the friendships, the smiling faces,” explains Edwina. “Gillette gives children the ability to be themselves, to find out who they are.”

A bright and articulate sixth grader, Katie’s mission in life is helping people understand that children who have special needs are no different from other kids. “She realizes that her ability to speak brings tremendous opportunity to share what it’s like to live with a disability,” says Edwina.