Almost a year to the date of her daughter’s hospitalization and struggle to survive a life-threatening case of encephalitis, Gretchen Naumoff is planning a joyous 5K race to celebrate life and thank the caregivers in Akron Children’s Hospital’s Pediatric Intensive Care Unit (PICU).
“Emily’s Sparkle Sprint,” in honor of 11-year-old Emily Kungli, will take place at 9 a.m. September 21 in downtown Akron. The 5K race will begin at Lock 3 Park and the route takes place on the Towpath Trail.
According to Naumoff, Emily was at a family picnic last summer when she was bit by a mosquito. A few weeks later, she began to complain of headaches and, more worrisome, began to make nonsensical statements like, “Can you put some soup on my cereal?” and “The milk is outside. Let it in.”
A spinal tap confirmed the diagnosis of encephalitis and Emily was admitted to the PICU. She seemed to respond well to treatment and went home after a week.
“But the headaches soon returned, and on our way back to the hospital, Emily had the first of many seizures,” said Naumoff. “She then stayed in a medical-induced coma for weeks. Nothing is harder than seeing your active, vibrant child like that.”
Michael Forbes, M.D., a pediatric critical care physician, said Akron Children’s typically treats about 5 to 8 children per year with encephalitis caused by mosquito bites and Emily’s case was one of the most serious he has ever seen.
“With the degree of seizures she was having, we worried that she may be bed-ridden for the rest of her life,” Dr. Forbes said. “She didn’t respond to medicine until we got to an extremely high dose.”
On the other hand, noted Dr. Forbes, her MRIs looked normal, offering Emily’s parents and her medical team some hope that she would pull through.
One day, after three weeks in the medically-induced coma, Emily began responding. Talking, eating and first steps were celebrated. Emily is working to gain back weight – she lost 18 pounds while in the hospital – but is otherwise back to her original self. She has resumed gymnastics, loves hanging out with friends, and will be starting 6th grade in the Revere Schools in the fall.
Meanwhile, Naumoff vowed to stay in touch with the PICU staff and never lose her gratitude. She coordinated an effort to make and donate more than 250 blankets for other critically-ill patients and then she had the idea for a race to raise funds for the unit.
“As Emily was in that coma, we couldn’t wait for her to get her sparkle back, so calling the race Emily’s Sparkle Sprint seems fitting,” said Naumoff. “This is just our way of saying thank you. We are so very, very grateful for these doctors and nurses who gave us back our daughter. There are no words.”
Funds raised will help towards staff education, research opportunities and a yearly retreat for the PICU medical team.
The 5k is $35 for adults, $12 for children and includes a t-shirt and refreshments at the finish line. Strollers are welcome. Sign up at akronchildrens.org/picu5k
Time to Sparkle! 5k race on Sept. 12 will celebrate Emily's life, recovery from encephalitis
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