The moment Hailey Fruhschien was born, her mom, Michelle, knew something was wrong. She listened to her intuition and became her newborn's advocate to diagnose what she believed was a physical, cognitive or developmental problem.
"I kept asking the doctors to run tests and even when they didn't find anything and she came home, I knew something wasn't right," Michelle said.
Months passed, and Hailey developed additional symptoms. She began projectile vomiting, couldn't track people or items with her eyes and her body seemed weak. She wasn't rolling over and showed no indication that she would be able to sit up on her own. When Hailey was about six months old – even without a diagnosis from a pediatric specialist – Michelle and her husband, Andrew, a nurse practitioner at Holy Name, started Hailey on physical therapy through the hospital.
"At that point, it was hard for Hailey to hold her head up during tummy time, and she wasn't interacting with toys," Michelle said. "By then, we knew something was off but no one could tell us what was going on."
Finally, at eight months old, Hailey was diagnosed with Jordan's Syndrome, an extremely rare genetic disorder that affects only 200 children worldwide. Though it can impact each child differently, the symptoms may include low muscle tone, global developmental delays, seizures, visual problems, cognitive impairment and speech delays. Currently, there is no treatment for the condition but rehabilitation therapy can vastly improve symptoms and quality of life.
Now age 2, Hailey can sit up and she is working on standing. She receives physical, occupational and speech therapy seven days a week, either with her parents or at Holy Name.
"The science is strong and we're hoping for a treatment or cure," Michelle said. "Until then, Hailey will continue to gain skills. Once she has them, she won't lose them. She's just on a different timetable than other children."
Andrew and Michelle attribute Hailey's progress to the skilled therapists at Holy Name, who they say are knowledgeable and gentle with her. In many ways, she's like any other two-year-old, having days she just doesn't want to do what is asked of her. But the therapists persist, finding ways to engage Hailey in activities that have helped her with both her large and fine motor skills.
"I love every therapist that works with her," Michelle said. "Hailey has progressed so much from the early days. They always say 'when', not 'if', and that optimism has been so important to us."
Andrew is grateful that Hailey's therapy team considers her part of the Holy Name family. "Hers truly is a miracle story."
Learn more about the Center for Physical Rehabilitation at Holy Name Medical Center
