16:30 PM

College volleyball player returns to school after surviving rare neurological disorder

One in a million kids are affected by FIRES, and only 15-20% of FIRES patients return to a normal life


Chicago, IL – As Grace Hinchman returns to school this fall, the Loyola University Chicago volleyball player is literally “one in a million.”

In June, the 20-year-old from Geneva, Ill., was diagnosed with an extremely rare and catastrophic epilepsy condition called FIRES (febrile infection-related epilepsy syndrome), caused by inflammation in the brain after fevers, which can lead to severe neurologic and cognitive injury. One in a million kids are affected by FIRES, and only 15-20% of FIRES patients return to a normal life.

“The odds are incredible; I’m literally one in a million,” said Hinchman. “You never think something like this will happen to you, and when it does, it’s really scary.”

In early June, Hinchman developed headaches and high fevers, which led to multiple seizures per day. When she stopped following commands and conversing intelligibly between seizures, Hinchman was intubated and sedated in the Neuro Intensive Care Unit at Northwestern Memorial Hospital. Test results came back consistent with FIRES – a rarity for the neurology team.

“I have taken care of patients who had previously been diagnosed with FIRES, but this was truly the first time where we made the diagnosis and had to make that decision to implement therapy,” said Ayush Batra, MD, neuro critical care specialist at Northwestern Medicine. “These are one in a million type cases that present every now and then, and many of our residents and fellows will just see one or two throughout their training.”

The medical team started Hinchman on an off-label medication called anakinra, which has been shown to be effective in small case series to control the devastating disease. After receiving the medication, Hinchman was able to communicate and function normally within 48 hours. She was discharged from the hospital on July 2 and received medical clearance to return to volleyball practice with her teammates.

“Grace is doing phenomenally well, and she’s stopped having seizures,” said Stephen VanHaerents, MD, epilepsy specialist at Northwestern Medicine. “These novel treatment options weren’t available 10 to 15 years ago, but thanks to active research, we can now treat FIRES very differently. Grace has responded beautifully to these medications, and her story is important for the epilepsy community because it shows you can get control of your seizures and get your life back.”

Hinchman will also follow the ketogenic (or keto) diet to help lower her risk of seizures. Research shows, after three months on the keto diet, 87% of patients with epilepsy report an improved quality of life. Hinchman hopes her comeback story inspires others.    

“Before this happened to me, I knew nothing about FIRES,” said Hinchman. “By sharing my story, I want to help doctors and researchers learn more about the disease, and hopefully lead to more successful outcomes. Thanks to my medical team at Northwestern Medicine, I’m able to return to my volleyball team and play the sport I love. I will forever be grateful.”