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.
Emily’s Sparkle Sprint, in honor of 11-year-old Emily Kungli, will take place at 9 a.m. Sept. 21 in downtown Akron. The 5K race will begin at Lock 3 Park and continue on the Towpath Trail.
Mosquito bite leads to encephalitis
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 forget the names of common items and make nonsensical statements like, “Can you put some soup on my cereal?”
A spinal tap confirmed the diagnosis of encephalitis, a rare brain inflammation caused by a virus.
Emily was admitted to Akron Children’s PICU and seemed to respond well to treatment. She 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 Gretchen. “She then stayed in a medically-induced coma for weeks. Nothing is harder than seeing your active, vibrant child like that.”
Critical care physician Michael Forbes said Akron Children’s PICU typically treats about 5 to 8 children each year with encephalitis caused by mosquito bites. Emily’s case was one of the most serious he has ever seen.
“She didn’t respond to medicine until we got to an extremely high dose,” said Dr. Forbes. “With the degree of seizures she was having, we worried that she may be bedridden for the rest of her life. There was that question about how she would be and who she would be.”
One day, after 3 weeks into the medically-induced coma, Emily’s eyes responded when Jack, a dog in Akron Children’s Doggie Brigade, licked her feet. Then, she pulled out her feeding tube – a purposeful act and a good sign. Soon, talking, eating and first steps were celebrated.
Today, Emily is working to gain 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, Gretchen vowed to stay in touch with the PICU staff and never lose her gratitude.
“The PICU staff becomes your family,” said Gretchen, who became particularly close with Emily’s night nurse, Danielle Standohar. “I didn’t sleep the first few nights, but, with Danielle there, I could sleep. The nights in the PICU are the worst. I would talk to Emily, talk to God, and talk to Danielle.”
Since Emily left the hospital, Gretchen has coordinated an effort to make and donate more than 250 blankets for other critically-ill patients. Then she had the idea for an annual race to raise funds for the unit.
“When 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 Gretchen. “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.”
Funds raised will support 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. Prizes will be awarded to the top-finishing man, woman, child and the racer displaying the most sparkle. Strollers are welcome.