KNOWN IN REAL LIFE AS:
Meet Princess Ninja at the FirstEnergy Akron Marathon, Half Marathon & Team Relay
on September 29.
View a course map.
Meet Princess Ninja
Emmie Wanzer, Age 6, from Jackson Twp., Ohio
Why Emmie is an #ACHero: At age 2, Emmie woke up from a nap with transverse myelitis, which took away her ability to walk and move from her neck down. Through strong will and the help of doctors, therapists and equipment adaptations, Emmie has learned to operate a wheelchair and mouth stick with her head to gain independence and participate in school and dance.
Sidekicks: Her doggies, Macy and Gizmo
When she’s not busy overcoming obstacles: Emmie loves dancing and being a member of Dance Unlimited, Akron Children’s therapeutic dance program. She also enjoys reading, writing stories and playing video games with her brothers.
Did you know fact: Emmie has 4 older brothers and 2 dogs!
Emmie’s Story: Emmie loves taking off in her power wheelchair and going as fast as it will take her. Through strong will and clinical care, she’s become skilled at maneuvering her chair, but more importantly, she’s become a master at adapting to life.
At 2 years old, Emmie awoke from her afternoon nap with some unusual sensations.
“She had a hard time waking up, moving her arms and walking,” said Kari Wanzer, Emmie’s mom. “I thought she pinched a nerve, but by the time the paramedics got her to the ER, she wasn’t moving at all.”
Akron Children’s emergency medicine staff ran a number of tests, x-rays and CT scans to determine the cause of her pain. While the family waited for results, Emmie went into respiratory failure.
Emmie was intubated and put on a ventilator. Once stable, she had a 4-hour MRI to check for abnormalities in her brain and spinal cord. The results weren’t good.
“The sheeting or myelin in her spinal cord was damaged from C1 down through her thoracic region,” said Kari. “They mentioned a few different things they thought could be the cause but wanted her to see a neurologist and have a spinal tap to confirm.”
Emmie’s official diagnosis came back as an aggressive form of transverse myelitis. This neurological condition causes inflammation within the spinal cord and interrupts communication between nerve fibers in the spinal cord and the rest of the body, affecting sensation and nerve signaling.
“Ultimately, they think it was caused by an infection that started in her spinal cord,” said Kari. “We were told it’s rarer than multiple sclerosis…A third of people recover well, but Emmie has had a tough time gaining back movement beyond her head and shoulder.”
Initially, Emmie had no movement at all. She had to learn to eat and speak again because of the impact of her tracheotomy (trach) surgery. After hours of speech therapy, doctors had to reposition Emmie’s trach to help improve her speech.
She remained on a ventilator to breathe, had a gastrostomy tube placed for feeding and began extensive physical and occupational therapies to learn how to adapt to her new normal.
Emmie spent a month in the pediatric intensive care unit (PICU) where her parents also learned how to manage her ventilator, set up portable vents and how to suction her since a ventilator would become a part of her everyday life. After months of tests, surgeries, specialists and inpatient rehab, Emmie was finally discharged from the hospital.
At home, she kept up with her therapies and a host of doctor visits – neurology, urology, gastroenterology, physiatry, psychology, endocrinology, and orthopedics due to the onset of scoliosis. Meanwhile, her family worked to get her a power wheelchair that she could operate on her own with her head.
“Independence is a big deal for Emmie,” said Kari. “She didn’t want us doing things for her…she wanted to figure out a way to get things done herself.”
Two years later, Emmie started half day preschool with her new chair. Now in first grade, she uses mouth adaptors to draw, write, play computer games and participate in class. And, she’s taken up dance.
“Emmie loves Dance Unlimited,” said Kari. “Because of the stamina and confidence she’s gained by working with Dance Unlimited, she was able to dance in a half time show at a high school basketball game. She went out there and showed people how she can dance…she was smiling the whole time.”
Emmie continues with therapy at home and school to help with her aptitude and, thanks to specially designed ramps, wheelchair and swing, she has the freedom to cover more ground…as fast as possible!