'A miracle': Loyola volleyball player returns to court after being diagnosed with rare condition

Number 17 for the Loyola volleyball team is known for her digs and impressive defense, but in June, Grace Hinchman faced an opponent like no other.

"I remember just waking up and like my neck kind of hurt. I just thought, yes, slept on my pillow wrong. Then I started getting headaches and a pretty high fever," said Hinchman.

The 20-year-old from Geneva started having seizures. Her last memory was the nurse in the ambulance rushing her to Northwestern Medicine.

"She was like, I heard you play volleyball, Loyola Chicago. You must be pretty strong. Just squeeze my hand like as hard as you can. So, I did that. And I remember asking her if I was going to die."

Grace was intubated and sedated, as the seizures increased. Then, doctors diagnosed her with an extremely rare and often catastrophic epilepsy condition called FIRES, which stands for, "febrile infection-related epilepsy syndrome."


Northwestern Medicine says one in a million kids are affected by FIRES, and only 15-20% of FIRES patients return to a normal life.

"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," said Ayush Batra, MD, Neuro Critical Care Specialist at Northwestern Medicine.

Once they had a diagnosis, the medical team started treatment.

"These weren't really available 10, 15 years ago. Now, we treat this condition very different, and Grace has responded beautifully to these medications," said Stephen VanHaerents, MD, Epilepsy Specialist at Northwestern Medicine.

In fact, she was back practicing within days of getting released from the hospital, with a new appreciation for every moment.

"You never know how fast your life can change. So just being grateful to wake up every day. So lucky to be here, let alone being back to playing volleyball is truly I think a miracle," said Hinchman.

Grace hopes her story will help doctors and researchers learn more about this rare condition called FIRES. Plus, doctors at Northwestern want to show others in the epilepsy community there is hope.