Susan Axelrod shares her hope for a cure for epilepsy
Wednesday, July 20, 2011
At 7 months old, Lauren Axelrod was perfect in every way, her mom Susan remembers.
Until she caught a little cold. Until her mom found her limp and gray-blue in her crib. Until she had a seizure in her mother's arms. Until Susan called her own mom for advice: "Do babies do this?"
Until she got to the hospital and Lauren had another seizure in the waiting room. Until she and husband David got the diagnosis: Idiopathic seizure disorder.
In the pre-Internet days, the young first-time parents had no way of connecting that diagnosis to epilepsy. That shock would come years later.
"Here you are getting used to having a baby at all and then all of a sudden you are thrown into the medical mystery of this thing and dealing with the medical establishment," Susan recalls.
Susan and David Axelrod were just starting their lives-Susan was in graduate school, David was quickly making a name for himself at the Chicago Tribune. At the outset, they didn't know how to advocate for Lauren, something Susan thinks is true of any new parent with a child with a chronic illness.
"You are just thrown into it, you just do your very best. It's sink or swim. You muster it up from somewhere in there; you find some resource that keeps you going, keeps you strong," Susan says.
Taking care of Lauren, and later their two sons, became Susan's full-time job.
They learned to sleep with an ear tuned to a nursery monitor. During her seizures, Lauren would scream, "an almost in-terror kind of sound." The seizures came in clusters, treated with massive doses of medicine that took days to wear off.
"The most emotionally painful experience that we went through were during these clusters, where she would come to in between the seizures just long enough to become aware and feel the next one come on. And she would scream and cry and say 'Mommy, make it stop' and I couldn't. It was just, as a parent, the most horrendous thing to go through. "
In 1998, Susan and a few other mothers with children with epilepsy founded CURE, Citizens United for Research in Epilepsy. Since then, while David worked as a political consultant, helped elect Barack Obama president and became the president's senior advisor, Susan has become a very public face for a once-stigma-filled diagnosis, epilepsy.
The people she meets, with stories that both break her heart and inspire her because they are hauntingly similar to her own, have given her strength to keep fighting for a cure.
"This is her legacy," Axelrod says about Lauren and CURE. "I would give anything that it weren't, that her life would have been different," she says. "Now Lauren has an amazingly rich life; it really is about future generations."
Lauren, 30, lives at Misericordia in Chicago and has been seizure free for 11 years.