Cerebral Palsy Power
KNOWN IN REAL LIFE AS:
Meet Cerebral Palsy Power at the FirstEnergy Akron Marathon, Half Marathon & Team Relay
on September 29.
View a course map.
Meet Cerebral Palsy Power
Levi Detweiler, Age 4, from North Canton, Ohio
Why Levi is an #ACHero: Born 1 month premature, Levi suffered a brain injury at birth and wasn’t expected to live. After 17 days in the neonatal intensive care unit (NICU), a cerebral palsy diagnosis and 3 years of outpatient therapies, he has defied the odds. Thanks to his solid support team, spunky personality and hard work ethic, Levi is able to approach preschool, therapy and everyday life with courage and compassion.
Sidekicks: His older brother, Joshua, because they’re stronger together as the “Mighty Detweiler Brothers.”
Super power: Enormous determination and ability to work hard at things, which is what enables him to go, go, go!
When he’s not busy overcoming obstacles: Levi loves watching LeBron James on TV, jumping on his trampoline, running around with his brother and sitting in a time-out chair!
Did you know fact: Levi can play with his toy cars for 3 hours a day, every day, without interruption. His favorite car is Lightning McQueen.
Levi’s story: Levi Detweiler was born on April Fools’ Day, but his health was nothing to joke about. He experienced a brain injury at birth and wasn’t expected to live through the day, but a determined young Levi defied the odds.
Levi was born 1 month premature via an emergency cesarean section. He was resuscitated, intubated and transferred immediately from his birth hospital to Akron Children’s NICU. There, he received cold cap therapy to reduce the swelling around his brain.
“Akron Children’s was the only place that offered cold cap technology, so we were thankful we didn’t have to go far to get him help,” said Kate Detweiler, Levi’s mom. “For 72 hours, we sat and watched, hoping the cap would help prevent brain damage.”
Little Levi was struggling and put on life support.
“It was one of the most pivotal moments of my life,” said Kate. “The neonatologist was trying to prepare us for what may happen…the odds weren’t in his favor.”
Just hours old, Levi was defiant and fought for his life. He slowly weaned himself off life support, began breathing on his own, regulating his body temperature and eating. After 17 days in the NICU, Levi was ready to go home.
“After he came home, we waited. We waited to see what Levi would do,” said Kate. “We knew he had a traumatic event at birth so we waited to see if and how it would impact him achieving his infant milestones.”
After failing his newborn hearing test, he was soon diagnosed with sensory hearing loss and wore blue hearing aids in each ear to help. But, after 3 months and sedated hearing test, doctors determined Levi had only high-frequency hearing loss in 1 ear.
“The cold cap therapy was so amazing and worked wonders to protect him from severe brain damage, but no one expected implications to his hearing,” said Kate. “I like to think that’s why he doesn’t listen to me all the time now, but the truth is, he just doesn’t like what I have to say sometimes!”
After 2 years, and a number of tests and doctor visits later, Levi was diagnosed with a mild case of cerebral palsy, a condition that impairs muscle coordination. In support, he began working with physiatry and attending occupational, physical and speech therapies.
“Dr. (Micah) Baird is phenomenal and one of my most favorite people,” said Kate. “He gave us a cerebral palsy tool kit to learn more about it as a family and knows how to treat the whole child…He was among the first people to tell me I was doing a good job. He recognized we were all working hard in different ways to help Levi be his best.”
While Levi was making progress with his physical therapy, a year later, he was fitted with orthotic braces for his legs to help correct his abnormal gait. But, for the active and spunky Levi, he thought the braces were meant to help him run faster.
“He is a determined boy and does things his own way,” said Kate. “So far, I’d say his approach has worked really well for him!”
Today, Levi attends preschool and chases his brother around as often as possible. Levi also visits Dr. Marc Nelson in audiology and Dr. Baird in physiatry for annual check-ups and continues to receive physical and speech therapy.
“Raising a child with special needs has made my husband and I better human beings… Levi’s amazing abilities and special soul touch the lives of everyone he knows,” said Kate. “We are so grateful to Children’s Hospital for their staff who continue to walk alongside us on this journey with compassion, understanding and wisdom.”