David, Susan Axelrod share story behind non-profit funding epilepsy research

CHICAGO (WLS) -- A Chicago-based nonprofit that funds epilepsy research recently celebrated its 25th anniversary.

It's founding is rooted in the struggle of a family Chicago knows well.

Tanja Babich sat down with Susan and David Axelrod to reflect on the journey that brought them and the organization Susan founded to this point.

In January 1982, Chicago was gripped by near-record-setting cold. David Axelrod remembers driving from his home to the hospital, where his wife Susan and infant daughter Lauren were waiting.

"I thought, 'Boy, I thought hell was supposed to be hot. But this is hell. This is just hell,'" David said.

Seven-month-old Lauren had been found blue and limp in her crib. When Susan went to pick her up, Lauren stiffened and started frothing at the mouth. This was one of her first seizures and many others would follow.

"So this was in a matter of hours, we witnessed at least three major convulsive seizures in this tiny little body," Susan said.

The science of epilepsy at the time was sparse. Doctors treated symptoms, but they often couldn't pinpoint a cause.

David and Susan spent more than a decade sleeping with a baby monitor because Lauren's seizures often hit at night and they came in waves.

"In between, she grabbed Susan's hand and said, 'Mommy, make them stop'" David said.

They tried drugs, surgeries, diets and brain stimulation but nothing worked. The Axelrods feared they would lose their eldest child.

"A friend came to stay with her in the hospital and said, 'You go out,'" Susan said. "And we went out to eat. I couldn't eat. Just drank some wine and teared up and said, 'That's it.' I could cry for the rest of my life or we could turn this into something that could make lives better for others."

That's how the idea for a nonprofit to fund research came to be. It's also around the time that a new drug was offered to the Axelrod family. It had terrible side effects, but it also held the potential to save Lauren's life.

"That drug actually has been miraculous," Susan said. "That was in April of 2000 that she went onto that medication. And, she hasn't had a seizure since.

That turning point in Lauren's health opened the door to founding CURE Epilepsy.

"I would never have had the strength to get this whole thing off the ground without the energy and the support of these other mothers," Susan said.

It was a sisterhood none of them wanted to be a part of.

"This organization really is about trying to make sure other moms are never in that position," David said.

Susan was determined to change the narrative about the disease. Doctors said it could be endured.

"I can't go and speak at a conference called 'Living Well with Epilepsy,'" Susan said. Instead, she said, "it must be cured."

Susan became the mouthpiece for a movement to demand answers and better outcomes for patients with epilepsy.

"After I spoke, I went into the ladies room, and I can't tell you the number of moms who just came up, and hugged me and started crying, saying, 'Thank you,'" Susan said.

Over the course of 25 years, CURE Epilepsy has raised more than $90 million to fund research for a cure.

"My wife is a hero," David said. "I'm mostly a cheerleader, and just in awe of her and what she's done."

That $90 million milestone was celebrated this past weekend at the organization's annual gala.

"It has meant the world to me to know there is a generous community of people fueling new research because my daughter continues to have seizures," said Nora Hennessy.

University of Chicago Medicine Pediatric Neurology Chief Dr. Douglas Nordli also weighed in.

"We've come a long way, and I think mostly with new genetic discoveries, we're getting even closer," Nordli said.

ABC7's Tanja Babich asked Susan to reflect on how far CURE Epilepsy has come and its contributions toward a cure. As she searched for words and the composure to speak, David answered for her: "Not enough."

"We're not celebrating. We're not in a celebrating mood until no one has to go through this," David said.