Hospital Heroes Compete in a Marathon of their Own: Elise Bonsky
September 22, 2020
Our 2017 hero was 6-year-old Elise Bonsky, daughter of Jenny Bonsky, senior business analyst, FEU Support. At age 3, Elise was diagnosed with Alexander Disease (AxD), a rare disorder of the nervous system that can cause seizures, developmental regression, muscle tightness and speech issues. There is no known cure, and at the time she was diagnosed, Elise was one of 75 cases of AxD in the world. Despite suffering a setback in 2019, Elise is now almost 9 years old and is thriving. She’s entering third grade at Fort Island Primary School and Jenny is pleased to report, “Elise is happy she is healthy, and best of all, she’s approaching remote learning the way she approaches everything else in her life – with a big smile.” Staying at home due to the COVID-19 health emergency has been good for Elise’s health because it offers less exposure to germs. And just as she has conquered other challenges, Elise has embraced online learning and has adjusted well.
To help combat the disease, Elise attends therapeutic horseback riding classes twice a week and stays active with her sister, Emmersyn. Together the girls enjoy swimming, scooter riding, baking, cooking, drawing, making crafts and playing with their pets.
Jenny shared big news. “We are beyond excited that in late 2020, there will be a clinical trial available for AxD. We hope we’ll be heading to Philadelphia so Elise can receive the treatment – and while it’s not a cure – it is designed to stop any further degradation of her brain. We are hopeful that, with continued therapies, her brain may be able to heal a bit on its own,” Jenny said.
Dr. Veluchamy, Elise’s neurologist at Akron Children’s Hospital has played a major role in her care. Jenny said, “He has answered every call or text we’ve ever sent and has been so instrumental in her journey. We are beyond grateful for him, as a doctor and as an advocate for our sweet girl.”
For additional information on this year’s virtual FirstEnergy Akron Marathon.
Check back tomorrow for an update on Rylee Kulick.
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