CURE-Citizens United for Research in Epilepsy-is a
volunteer-based nonprofit organization started by parents of
children with epilepsy. Its focus is on raising money for research
to find a cure and raising awareness and destroying the stigma
around epilepsy. Axelrod believes the effort is helping build a
stronger community and empowering people to speak up about
Find 10 simple ways to help at cureepilespy.org.
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
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
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
"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
"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.
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