Susan Axelrod and daughter Lauren, 27 (photo by Katherine Lamber for PARADE)

For more on the Axelrods and CURE, tune in to NBC's TODAY show on Monday, 
February 16.

When Susan Axelrod tells the story of her daughter, she begins like most 
parents of children with epilepsy: The baby was adorable, healthy, perfect. 
Lauren arrived in June 1981, a treasured first-born. Susan Landau had 
married David Axelrod in 1979, and they lived in Chicago, where Susan 
pursued an MBA at the University of Chicago and David worked as a political 
reporter for the Chicago Tribune. (He later would become chief strategist 
for Barack Obama's Presidential campaign and now is a senior White House 
adviser.) They were busy and happy. Susan attended classes while her mother 
babysat. Then, when Lauren was 7 months old, their lives changed overnight.

"She had a cold," Susan tells me as we huddle in the warmth of a coffee shop 
in Washington, D.C., on a day of sleet and rain. Susan is 55, fine-boned, 
lovely, and fit. She has light-blue eyes, a runner's tan, and a casual fall 
of silver and ash-blond hair. When her voice trembles or tears threaten, she 
lifts her chin and pushes on.

Heroic Parents

 I Must Save My Child After her daughter was diagnosed with epilepsy, Susan 
Axelrod took on the cause.
 The baby was so congested, it was impossible for her to sleep. Our 
pediatrician said to give her one-quarter of an adult dose of a cold 
medication, and it knocked her out immediately. I didn't hear from Lauren 
the rest of the night.  In the morning, I found her gray and limp in her 
crib. I thought she was dead.

"In shock, I picked her up, and she went into a seizure--arms extended, eyes 
rolling back in her head. I realized she'd most likely been having seizures 
all night long. I phoned my mother and cried, 'This is normal, right? Babies 
do this?' She said, 'No, they don't.'"

The Axelrods raced Lauren to the hospital. They stayed for a month, entering 
a parallel universe of sleeplessness and despair under fluorescent lights. 
No medicine relieved the baby. She interacted with her parents one moment, 
bright-eyed and friendly, only to be grabbed away from them the next, shaken 
by inner storms, starting and stiffening, hands clenched and eyes rolling. 
Unable to stop Lauren's seizures, doctors sent the family home.

Learn more: Get the facts about epilepsy

The Axelrods didn't know anything about epilepsy. They didn't know that 
seizures were the body's manifestation of abnormal electrical activity in 
the brain or that the excessive neuronal activity could cause brain damage. 
They didn't know that two-thirds of those diagnosed with epilepsy had 
seizures defined as "idiopathic," of unexplained origin, as would be the 
case with Lauren. They didn't know that a person could, on rare occasions, 
die from a seizure. They didn't know that, for about half of sufferers, no 
drugs could halt the seizures or that, if they did, the side effects were 
often brutal. This mysterious disorder attacked 50 million people worldwide 
yet attracted little public attention or research funding. No one spoke to 
the Axelrods of the remotest chance of a cure.

At home, life shakily returned to a new normal, interrupted by Lauren's 
convulsions and hospitalizations. Exhausted, Susan fought on toward her MBA; 
David became a political consultant. Money was tight and medical bills 
stacked up, but the Axelrods had hope. Wouldn't the doctors find the right 
drugs or procedures? "We thought maybe it was a passing thing," David says. 
"We didn't realize that this would define her whole life, that she would 
have thousands of these afterward, that they would eat away at her brain."

"I had a class one night, I was late, there was an important test," Susan 
recalls. "I'd been sitting by Lauren at the hospital. When she fell asleep, 
I left to run to class. I got as far as the double doors into the parking 
lot when it hit me: 'What are you doing?'?" She returned to her baby's 
bedside. From then on, though she would continue to build her family (the 
Axelrods also have two sons) and support her husband's career, Susan's chief 
role in life would be to keep Lauren alive and functioning.

The little girl was at risk of falling, of drowning in the bathtub, of dying 
of a seizure. Despite dozens of drug trials, special diets, and experimental 
therapies, Lauren suffered as many as 25 seizures a day. In between each, 
she would cry, "Mommy, make it stop!"

While some of Lauren's cognitive skills were nearly on target, she lagged in 
abstract thinking and interpersonal skills. Her childhood was nearly 
friendless. The drugs Lauren took made her by turns hyperactive, listless, 
irritable, dazed, even physically aggressive. "We hardly knew who she was," 
Susan says. When she acted out in public, the family felt the judgment of 
onlookers. "Sometimes," Susan says, "I wished I could put a sign on her back 
that said: 'Epilepsy. Heavily Medicated.'?"

At 17, Lauren underwent what her mother describes as "a horrific surgical 
procedure." Holes were drilled in her skull, electrodes implanted, and 
seizures provoked in an attempt to isolate their location in the brain. It 
was a failure. "We brought home a 17-year-old girl who had been shaved and 
scalped, drilled, put on steroids, and given two black eyes," Susan says 
quietly. "We put her through hell without result. I wept for 24 hours."

The failure of surgery proved another turning point for Susan. "Finally, I 
thought, 'Well, I can cry forever, or I can try to make a change.' "

Susan began to meet other parents living through similar hells. They agreed 
that no federal agency or private foundation was acting with the sense of 
urgency they felt, leaving 3 million American families to suffer in 
near-silence. In 1998, Susan and a few other mothers founded a nonprofit 
organization to increase public awareness of the realities of epilepsy and 
to raise money for research. They named it after the one thing no one 
offered them: CURE--Citizens United for Research in Epilepsy.

"Epilepsy is not benign and far too often is not treatable," Susan says. "We 
wanted the public to be aware of the death and destruction. We wanted the 
brightest minds to engage with the search for a cure."

Then-First Lady Hillary Clinton signed on to help; so did other politicians 
and celebrities. Later, veterans back from Iraq with seizures caused by 
traumatic brain injuries demanded answers, too. In its first decade, CURE 
raised $9 million, funded about 75 research projects, and inspired a change 
in the scientific dialogue about epilepsy.

"CURE evolved from a small group of concerned parents into a major force in 
our research and clinical communities," says Dr. Frances E. Jensen, a 
professor of neurology at Harvard Medical School. "It becomes more and more 
evident that it won't be just the doctors, researchers, and scientists 
pushing the field forward. There's an active role for parents and patients. 
They tell us when the drugs aren't working."

The future holds promise for unlocking the mysteries of what some experts 
now call Epilepsy Spectrum Disorder. "Basic neuroscience, 
electrophysiological studies, gene studies, and new brain-imaging 
technologies are generating a huge body of knowledge," Dr. Jensen says.

Lauren Axelrod, now 27, is cute and petite, with short black hair and her 
mother's pale eyes. She speaks slowly, with evident impairment but a strong 
Chicago accent. "Things would be better for me if I wouldn't have seizures," 
she says. "They make me have problems with reading and math. They make me 
hard with everything."

By 2000, the savagery and relentlessness of Lauren's seizures seemed 
unstoppable. "I thought we were about to lose her," Susan says. "Her doctor 
said, 'I don't know what else we can do.'?" Then, through CURE, Susan 
learned of a new anti-convulsant drug called Keppra and obtained a sample. 
"The first day we started Lauren on the medication," Susan says, "her 
seizures subsided. It's been almost nine years, and she hasn't had a seizure 
since. This drug won't work for everyone, but it has been a magic bullet for 
Lauren. She is blooming."

Susan and David see their daughter regaining some lost ground: social 
intuition, emotional responses, humor. "It's like little areas of her brain 
are waking up," Susan says. "She never has a harsh word for anyone, though 
she did think the Presidential campaign went on a little too long. The 
Thanksgiving before last, she asked David, 'When is this 
running-for-President thing going to be finished?' "

CURE is run by parents. Susan has worked for more than a decade without pay, 
pushing back at the monster robbing Lauren of a normal life. "Nothing can 
match the anguish of the mom of a chronically ill child," David says, "but 
Susan turned that anguish into action. She's devoted her life to saving 
other kids and families from the pain Lauren and our family have known. What 
she's done is amazing."

"Complete freedom from seizures --without side effects--is what we want," 
Susan says. "It's too late for us, so we committed ourselves to the hope 
that we can protect future generations from having their lives defined and 
devastated by this disorder."
____________________________________________________________________________________________

Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation
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