HotmailMom: ‘I must save my child’ from epilepsy
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.”
For more stories about families and the health challenges their children face, visit Parade.com.
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