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.)
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 hope that someone close to the Axelrods has pointed out that there is a wonderful medicine that will help halt the seizures, with no “brutal” side effects… the only problem is that Congress won’t let the people of Washington DC use that medicine for epilepsy, even though 69% of them voted for that privilege. Maybe Susan Axelrod should read the testimony of grand mal epilepsy sufferer Valerie Corral of WAMM, who’s lived with her epilepsy for 36 years now.
You can contact the White House and encourage President Obama to pressure Congress to overturn the Barr Amendment and allow the residents of our nation’s capital to finally have their will recognized and their votes respected, so maybe Susan and David Axelrod could find some relief for their daughter.