What started as annoying but seemingly innocent mosquito bites last summer sent Emily Kungli to Akron Children’s Hospital with life-threatening swelling in her brain.
For nearly two weeks, doctors in the pediatric intensive-care unit couldn’t say whether Emily, then 10, would ever make a full recovery.
Her mother, Gretchen Naumoff, waited by her bedside for Emily to open her eyes.
“All you want is for her to get her sparkle back,” he mother said. “It’s very frustrating waiting day after day, waiting for her to open her eyes and talk to you again.”
Now Emily and her family are giving back to the staff that helped her successfully battle La Crosse encephalitis by planning the Emily’s Sparkle Sprint 5K run through downtown Akron to benefit the hospital’s pediatric intensive-care unit.
“They became my best friends,” Naumoff said. “They are my family. She would not have survived without these people.”
Several weeks after noticing the itchy bumps on her arms and legs after a family picnic last August, Emily, now 11, started complaining her head hurt.
“It was the worst headache,” Emily recalled.
Days later, she spiked a fever and began hallucinating that bugs were crawling all over her.
Doctors at Children’s diagnosed her with encephalitis, or an infection with inflammation in the brain. After appearing to recover within a week, she was sent home.
Almost a week later, though, the headaches returned, along with vomiting.
As her mother rushed her back to the hospital from their home in Richfield, Emily had a seizure — the first of many she would suffer over the next couple weeks in the hospital’s pediatric intensive-care unit.
She spent 12 days in a coma induced by multiple anti-seizure medicines that initially appeared to do little to help her condition.
“She was seizing and seizing so much that despite all the medicine we were using to stop the seizures she needed a breathing tube,” said Dr. Michael Forbes, a pediatric critical care physician who cared for Emily. “She ended up on some of the highest doses of epilepsy drugs I’ve ever given. A few of the medicines were beyond the guidelines because we felt we had to stop the seizures.
“…Our biggest worry with prolonged seizures is there’s permanent brain damage.”
Finally, her seizures stopped. A couple days later, she tried to rip her feeding tube out of her nose — a positive sign that she was aware and able to make purposeful movements.
“There was still a big question about what she would do and, frankly, who she would be after all this,” Forbes said.
Blood tests confirmed Emily’s illness was caused by a mosquito-borne virus.
Most people who contract the La Crosse encephalitis virus from a mosquito bite have minimal or no symptoms. Less than 1 percent of people exposed to the virus develop encephalitis, according to Dr. Eric Robinette, a chief resident at Children’s who has been researching viral encephalitis.
Children’s typically treats fewer than 10 cases per year of La Crosse encephalitis in its pediatric intensive-care unit (PICU).
“Very few of them were ever like Emily,” Forbes said. “Maybe a little headache.”
The La Crosse encephalitis virus and other mosquito-borne illnesses are likely more common because milder cases aren’t reported, Robinette said.
In Emily’s case, it’s unknown why she became gravely ill. Emily had always been an active, healthy kid. Her mother, stepfather, Dr. Tom Naumoff, and 15-year-old brother, Nick Kungli, were at the same picnic but didn’t get sick.
Despite her struggles, Emily has made a full recovery and continues to regain weight after losing 18 pounds while sick. Last month, she finally was weaned off all anti-seizure medications.
“You gave me back my daughter,” Naumoff said of the PICU staff.
Emily’s Sparkle Sprint will take place at 9 a.m. Sept. 21, starting at Lock 3 in downtown Akron. Prizes will be awarded, including special recognition for the runner decked out with the most sparkles.
Proceeds will benefit PICU staff education, research and a yearly retreat.
The cost is $35 per adult and $12 per child.
For more information or to register, visit www.akronchildrens.org/picu5k.
Cheryl Powell can be reached at 330-996-3902 or firstname.lastname@example.org. Follow Powell on Twitter at twitter.com/CherylPowellABJ.