Meet Super E, Just Being Me

Elise Bonsky, Age 6, from Copley, Ohio

Sidekicks: Mom, dad, little sister, Emmersyn, dog, Max, and cat, Blu

When she’s not busy overcoming obstacles: Elise loves to dance and do gymnastics, swim and ride horses. She also enjoys coloring, especially with her favorite color, green, and doing puzzles.

Did you know fact: Elise had an opportunity to meet her very own hero, Cleveland Cavalier and Akron native, LeBron James! During her visit, she presented him with a handmade crown that King James sits proudly in his locker! Elise clearly inspires everyone around her – even the biggest, most famous basketball stars!

LeBron James wears the crown Elise made for him.

Why Elise is a #ACHero: Sweet, fun-loving Elise follows a strict diet and medication plan, puts in endless hours of therapy and attends ongoing doctor visits all over the country to manage symptoms caused by Alexander disease. Even in the face of a non-curable disease, Elise’s larger-than-life personality and perseverance offer hope and inspiration to those around her.

Elise’s Story: Elise was born with a full head of hair and a happy, healthy disposition. During her first year, she was meeting developmental milestones but her parents noticed signs something was different about her progress. Elise’s speech wasn’t improving, her hand was unsteady while eating and she had balance issues.

On one particular day, Elise broke out in a rash all over and began having tremors. Unsure of what was wrong, her parents took her to see their pediatrician, Dr. Molly Shaw at Akron Children’s Hospital Pediatrics. Upon further examination and hearing about Elise’s symptoms, Dr. Shaw recommended Elise see a neurologist for additional care.

Elise at her first birthday party.

The next day, as Elise walked through the doors of Akron Children’s neurology department, she suffered the first of nearly 40 seizures she’d go on to have in the coming years. The neurologist confirmed Elise had a seizure condition and started her on an anti-seizure medication before her second birthday.

By age 2, Elise had her first MRI so doctors could better understand the cause of her seizures and ensure there wasn’t something more going on in her brain. Within 24 hours of the test, her parents received a call that turned their world upside down.

“We were told the MRI showed abnormalities or gray matter on Elise’s brain and she needed to come in for more testing to figure out the cause,” said Elise’s mother, Jennifer Bonsky. “It’s the kind of moment that takes your breath away…”

After a repeat MRI and a host of genetic and mitochondrial disease tests, it appeared the gray matter in Elise’s brain was isolated to one area, which was most likely responsible for her speech and coordination issues. And, all the genetic tests came back clear. As long as Elise continued to progress and develop over the coming months and year, she would just need to come in for an annual MRI to ensure nothing in her brain changed.

For the next year, Elise went through regular speech and physical therapy sessions and was making positive strides.

“We felt really optimistic about her condition going into our annual appointment,” said mom. “We saw huge improvements in Elise’s development so we thought we were good…After her MRI, I got a call the next day saying the doctor saw changes in Elise’s brain and that we needed to come to the hospital right away to talk…It was the first day I heard the words Alexander disease.”

Alexander disease is a rare disorder of the nervous system and part of a group of disorders called leukodystrophies that can cause seizures, developmental regression, muscle tightness and speech issues. There is no cure or standard treatment for the disease. At the time of her diagnosis, Elise was 1 of 75 known cases of Alexander disease in the world.

Akron Children’s neurologist, Dr. Vivek Veluchamy recommended an out-of-state expert who specialized in the disease and could offer additional treatment to help Elise manage her disease.

“Typically, the earlier the onset of Alexander disease the worse the condition, but Elise is a fighter,” said Jennifer. “While some kids her age are on feeding tubes, tracheotomies or not able to talk, Elise is going to school, swimming, dancing and she walks unassisted.”

Today, Elise receives treatment and ongoing therapy from a variety of providers and follows a strict diet and medication plan to manage symptoms caused by the disease. One of her biggest supporters is still Dr. Veluchamy who has been with Elise since the beginning and continues to see her quarterly to monitor her disease.

“Elise inspires me and everyone around her by exceeding expectations…She makes the impossible seem possible.”

Elise is the featured hero selected by FirstEnergy, the presenting sponsor of the Akron Children’s Hospital Akron Marathon, Half Marathon & Team Relay. Jennifer Bonsky, a senior business analyst at FirstEnergy Corporation, and husband, Christopher, will join their daughter, Elise, at the FirstEnergy Hero Zone, located along the race route to inspire and cheer on runners at the Sept. 23 race.

Meet Super E, Just Being Me (Elise Bonsky) at the Akron Marathon
on September 24.

ZONE
12.5

View a course map.

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