Reeve Spotlight: Frazier Rehab Institute Pediatric Program

Posted by Reeve Staff in Daily Dose on February 20, 2017 # NeuroRecovery Network

One-of-a-kind. That’s how Kylee Hoelscher describes her six-year-old daughter, Eden.

“She’s a total goof-ball,” says Hoelscher. “Rarely upset and always positive.”

These are especially impressive attributes given Eden’s difficult journey over the past year. In December 2015, Eden sustained a spinal cord injury at the T8/T9 level from doing a backbend in her living room.

“She was in the ICU for five days, then inpatient rehab for six weeks,” says Hoelscher. “But when she was discharged, we didn’t know where to go.”

At the end of March 2016, the family learned about the Frazier Rehab Institute, part of the Christopher & Dana Reeve Foundation's NeuroRecovery Network® (NRN) located in Louisville, KY, which recently expanded to include pediatric participants. Eden was accepted into the program in April 2016.

“Eden started to show significant improvement within the first twenty sessions of the program at Frazier,” says Hoelscher. “Locomotor Training has begun to retrain her spinal cord to be active again. With the support of her therapists, she has taken her first steps. No one was giving us this kind of hope back home, so we decided to sell our house in California and move to Kentucky full time.”

Since starting the NRN program, Eden has gained enough core strength to lean forward and back without falling. She has also started to recover some sensory function below the injury. She can now feel when she has a stomach ache and her body has begun to perspire. She even dropped two prescriptions and is down to taking just one daily medication.

“She has made significant, significant improvements in just the eight months here,” says Hoelscher. “Before, she couldn’t sit and remain steady if she lifted her hands off the ground. Now she can move herself around, transfer to and from the couch, dress herself, bathe herself, brush her own teeth and hair, and even tie her shoes. Her improved abdominal strength means she can now pass bowel movements which is a huge weight off our shoulders because it helps to avoid other complications.”

But, perhaps, best of all for the Hoelscher family, is that Eden has been able to get back to life as a six-year-old girl. She goes to Frazier five mornings a week and attends school in the afternoon.

“She missed the social interaction. Her biggest goal now is to learn to transfer from the wheelchair to the school chair,” says Hoelscher. “She also enjoys yoga and art, and she started taking tennis lessons with a friend. She also wants to join the tennis team and the school choir.”

On a recent family trip to Great Wolf Lodge, Eden was able to go down the waterslides by herself because of her improved core strength. She can also use her arms and core to pump on a swing, and she is starting to gain the ability to push the pedal on a bike.

“People don’t realize how much we use our core on a daily basis and how much else is taken away when we lose that ability,” says Hoelscher. “When we were in the hospital, everyone treated her so cautiously; they never saw the potential and hope for recovery. Frazier never gave us promises, but gave us hope that she would recover. The NRN literally changes people’s lives.”

In addition to her daughter’s improvements, Hoelscher has also benefited from the comradery the NRN offers.

“I’ve met many new friends through the NRN program,” says Hoelscher. “Knowing other parents with a child in this scary, awful situation helps a lot. Also, when asked, Eden says her physical therapist, MacKenzie, is her best friend.”

Moving forward, the family’s primary goal is to keep Eden healthy.

“The NRN has done a great job of helping us avoid other issues like worsening her slight scoliosis. Eden needs to be on her feet and bearing weight to eventually hold up an adult body,” says Hoelscher. “We want her to be comfortable in her own body, not nervous about injuring herself. Everything we do is to keep her body healthy as she grows to be an adult.”

Meanwhile, Eden is using her one-of-kind spirit to be an incredible advocate and ambassador for the paralysis community.

“Eden’s wonderful attitude and disposition make her very approachable and she is teaching others that someone in a wheelchair is not to be avoided,” says Hoelscher. “She wants to play and have fun just like everybody else. And now, thanks to the NRN, she can.”