Women’s Volleyball: Former Geneva standout fights her way back to the college court after devastating diagnosis

CHICAGO – Grace Hinchman thought the neck pain simply was a byproduct of sleeping on her pillow awkwardly.

For the former Geneva star libero who is now a junior volleyball player at Loyola University-Chicago, that was just the beginning of a whirlwind of medical tests, 26 days of hospital visits and the realization of living with a seizure condition so rare that Northwestern Medicine said one in a million children are affected.

Hinchman lives with a condition called FIRES (Febrile Infection-related Epilepsy Syndrome). According to Northwestern Medicine, FIRES is “caused by inflammation in the brain after fevers” and “only 15% to 20% of FIRES patients return to a normal life.”

Despite those odds, Hinchman was able to recover and continue her college volleyball career with the Ramblers at the start of this season within days of being released from the hospital.

Here is that miraculous story, compiled via interviews with Hinchman and her mother, Jane.

What began as a fever and a terrible headache at the beginning of June evolved into respiratory panels, ongoing symptoms and an initial visit to the Northwestern Medicine Central DuPage Hospital emergency room. Days later, Grace went to Edward Hospital in Naperville.

After tests showed a low white blood cell count, she was kept overnight.

“She was there one day. [Doctors] were continuing to check her bloodwork,” Jane said. “It was the next day that in the evening she had her first seizure. That just came out of nowhere. I was stunned.”

“I remember going back in that room and then from there I don’t remember anything else,” Grace told the Chronicle in an interview last month. “That’s, I guess, where I had my first seizure.”

After three days and multiple seizures, Grace was transferred to Northwestern Memorial Hospital in Chicago.

“I don’t remember having any seizure,” Grace said. “People ask me, ‘Could you tell when one was coming on?’ … I was on such high dosage of medicine, I don’t remember anything.”

“As it continued to unravel, we didn’t really know where it was going,” Jane said.

Because of the volume of seizures and how often they were coming, doctors were forced to intubate Grace on June 17 to try to stop the seizures.

On that day, one doctor, as Jane recalled, said Grace had 13 seizures.

“In total, she had 35 to 40 seizures. That was in a 10-day period from June 7 to June 17 when she had her last one. It was the fact they were getting closer together on June 17 and … [her] not correctly answering [identifying questions correctly following a seizure], they needed to intubate her,” Jane said.

“We said, ‘When?’ And [doctors] said, ‘Right now.’ That was something, of course, I’ll never forget.”

Jane remembers asking one of the doctors if her daughter would make a full recovery.

“This particular doctor said about 18%,” Jane said.

Grace doesn’t remember having tacos for dinner or ice cream.

“I was having a conversation with them. I seemed normal to them, but I don’t remember doing any of that,” she said. “I remember trying to pull a [feeding tube] out and they wouldn’t let me.”

Grace’s seizures ceased upon being intubated and she was extubated June 21.

“Whether mentally she was going to be able to answer the questions and where she was going to stand cognitively was still unknown,” Jane said. “After she was extubated, she right away couldn’t necessarily answer a question. She was even having trouble speaking.

“I think the doctor asked her after the first day that she was extubated, ‘Can you say today is a sunny day?’ And she couldn’t even say the words at all. The second day, when he asked her to say that, she just repeated it.”

Each day, Grace continued to make progress.

“That progress, [doctors] were so pleased with that, it just gave me hope that this was all going to work out OK,” Jane said.

“I [later] asked my sister, ‘Do you think at some point [the doctors] thought I was going to die?,’” Grace said. “She’s like, ‘probably,’ because they don’t see this very often. They were probably just as scared as I was or my family was.”

Grace even had to learn a walking motion again after being extubated.

“My sister was watching it and she said you just looked like a baby bird [learning to walk],” Grace said. “It just felt so weird.”

By the third day, she was able to walk normally again.

Grace was discharged from the hospital July 2.

Four days after being discharged, Grace went to Fusion Volleyball Club in Batavia and started doing basic volleyball activities for 10 minutes at a time.

Gradually, as time went on, the strength and endurance returned.

Now Grace is back to being her star self on the court.

“I’d definitely say she’s still the heart and soul of the back court,” Ramblers junior and Grace’s teammate Emily Banitt said in an interview in September. “Every day in practice, every game, she always comes determined to get better. Not only get better with herself, but push her teammates to get better.

“She’s just a ball of sunshine every time she comes to practice. She’s always coming to practice with a smile. Same with the games. She’s always hyping everyone up. Not only does she control the back court of the defense, she also controls the team’s energy a lot of the time, too.”

Grace’s brush with her life challenge has inspired her to raise awareness and potentially fundraise for epilepsy.

“The whole experience, I learned a lot,” Grace said. “Especially in volleyball, if you make a mistake, realizing there’s bigger things outside of volleyball. All the little things I thought were important before really aren’t in the grand scheme of things. Taking a moment. Taking a deep breath to reevaluate and realize the bigger picture.”