When Susan Axelrod found her seven-month-old daughter, Lauren, lying blue and breathless in her crib, she knew something was terribly wrong. She rushed to the emergency room where she discovered that her daughter had suffered a seizure—the first of many more to come.
Axelrod would spend the next 18 years watching her daughter have hundreds of seizures a day, trying countless failed treatments and struggling to make sense of a disease with very few answers. “It was life-changing,” she says. “Permanently life-changing.”
When the seizures first started, Axelrod was finishing a business degree at the University of Chicago and her husband, David, was a reporter with the Chicago Tribune. (He is now best known as the chief strategist for President Obama’s 2008 campaign.) Those early years weren’t easy. “At one point, David was making a reporter’s salary and I wasn’t able to work because [Lauren] was hospitalized so much,” she remembers. Lauren’s medication alone cost them $1200 each month.
Doctors provided little solace. Though epilepsy affects over three million Americans and kills more people each year than breast cancer, doctors know little about the causes or course of the disease. For a full thirty percent of people with epilepsy, including Lauren, the seizures are uncontrolled, meaning that doctors are unable to treat them.
“I didn’t know what I was dealing with for years,” Axelrod says. “The doctors used to say, the causes are so bad that you don’t want us to tell you.” But no matter how scary, Axelrod wanted answers. “Knowledge is empowering even if [the answer is] that this isn’t known or understood.”
She began finding answers when she joined a parent support group, where she met other mothers whose kids were also struggling with uncontrolled seizures. “It was a lightning bolt moment,” she says. “Up until then, I thought Lauren was the only one.”
In the group, Axelrod met two other mothers who were equally frustrated with the lack of awareness and information about epilepsy. Together, in 1998, the three mothers founded Citizens United for Research in Epilepsy (CURE), a non-profit organization dedicated to funding cutting-edge scientific research and spreading awareness about epilepsy. “It was an attempt on all of our parts to create something that felt positive and forward-thinking out of something that had been a sheer force of destruction in our lives,” she says.
CURE was the first to suggest that a cure was even possible. “Before we came along, epilepsy research had always been about masking the symptoms without any concern about why they started or where they came from,” Axelrod says.
CURE’s message tapped into a void, giving voice to people struggling with a disease that is often unrecognized and misunderstood. “Our voices really started to resonate,” she says. They gathered an ever-growing network of dedicated supporters and were “immediately embraced by many of the established scientists in the field.”
Today, CURE has raised over 18 million dollars and has funded 116 research projects, including studies on epilepsy in soldiers returning from Iraq. Every study they fund explores the causes and course of the disease in the hopes of finding a way to prevent or reverse it.
Axelrod says that CURE’s success came as “a total surprise” and admits, “I don’t think I had a clue what I was getting into.” But she has no regrets. “Our impact has been enormous and unprecedented and very personally satisfying.”
For someone so dedicated to improving others’ lives, she laughs when I ask her what she does for her own wellbeing. “I don’t do that very well, in all honesty,” she says. Though she recently took a moment to pamper herself with a manicure and pedicure, she says, “I felt sort of guilty about taking an hour and a half to do that.”
Her physical health takes more precedence. After surviving breast cancer in 1999, Axelrod learned the importance of caring for her body. She works out “religiously,” eats well and is very respectful of her body. “I do take care of myself physically,” she says. “I’m not as good at nurturing my soul—taking time to sit and read a book just for pleasure, that kind of thing.”
When Lauren was 18, a treatment finally took and her seizures stopped. Axelrod breathes easier now but often talks to parents whose kids are newly diagnosed. “It’s mind-boggling that I lived through that,” she says. “They’re memories that you don’t want to go back and revisit.”
Still, she bristles when people ask how she did it. “I say, well, was I given a choice? You do what you have to do because you’re watching your child suffer. You just dive in and hopefully swim.”
Two years ago, Axelrod was on a plane headed to Denver when the woman sitting in front of her dropped a note in her lap on the way to the restroom. She’d recognized Axelrod from a feature in Parade Magazine, which hangs framed above her desk. Axelrod remembers, “I opened the note, about how she developed epilepsy as an adult and how grateful she was for everything CURE has done. She signed it, Lynn ‘6C.’ We spent the rest of the plane ride just chatting in the back of the plane.”
Lynn and the millions of other people helped by Axelrod’s efforts would surely say that she found a way to swim—or fly—or any other metaphor for thrive.
For more information about CURE, visit www.cureepilepsy.org.