David Axelrod's Wife Describes Struggle With Daughter's Epilepsy

[babylonsister]

When her daughter was diagnosed with uncontrollable epilepsy, Susan Axelrod knew:
I Must Save My Child
By Melissa Fay Greene
Publication Date: 02/15/2009


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



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 t
"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.

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."

more...

http://www.parade.com/health/2009/02/susan-axelrod-CURE-epilepsy.html

[Pirate Smile]

1. I read it yesterday. Great article.

[gblady]

2. Wow, what courage...

thanks for sharing this...
I had no idea of the intensity of their experience.