Julie has had seizures at the Milwaukee Zoo. She’s had seizures at Disney World. She’s had seizures while we were driving at 65 mph down the Edens Expressway in Chicago. She had a seizure during her brother’s Bar Mitzvah, and at more Passover dinners than I care to remember. She’s had seizures all alone in the bathroom, as we stood helplessly outside the door that was blocked by her little body, listening to her head hitting the door. She’s had seizures on airplanes, and while we tried to navigate security at airports. She’s had seizures in swimming pools and on top of climbing bars.
 Julie’s seizures were partially controlled with medication until
puberty. We tried a dozen medications, sometimes up to four at
a time, without improvement. I pushed to try every new drug
combination, and became angry when others wanted to give up.
My husband Jim, a physician, understood that after two or three
failures, drugs were unlikely to help, and Julie was at increased risk
of status epilepticus (nonstop seizing). I didn’t realize that Julie
could die from the seizures, or that frequent seizures would affect
her cognitive abilities. We had never heard of SUDEP (Sudden
Unexplained Death from Epilepsy) at that time.
Eventually, surgery was our only option. At 14, Julie underwent
her first surgery, a left temporal lobectomy. Within five months, her
seizures returned, just as she was starting high school. She attended
school as best she could, sitting in a wheelchair with a nurse beside
her at all times. I sat outside the classroom in the hallway. After one
or two classes, I would take her home where she would sleep and
have seizures the rest of the day. She lost 40 pounds, due to medication
side effects, and was disappearing from us… physically and
cognitively.
Further testing revealed that Julie had diffuse cortical malformation
of the left side of her brain, and so a different type of surgery
was suggested--a functional hemispherectomy, which would disconnect
her malformed left hemisphere from the rest of her brain. This
procedure would hopefully prevent the spread of the seizures. The
price was high. We were told she would lose the function of her
right arm and hand, and the entire right side of her body would be
weakened.
We didn’t understand the full implications and the extraordinary
challenges ahead during her post-operative rehabilitation. We only
knew that we were losing our precious daughter, and that we had
this chance to save her. The decision wasn’t hard. We felt lucky that
she was a candidate for this surgery.
Rehabilitation was long and difficult. She had to relearn to
walk, talk, and retrain bowel and bladder control. She continues in
therapy to this day, five years later. She still does  not have functional
use of her right arm or hand and has lost her vision in the right side of each eye. She drools profusely. Over the next two and
a half years, Julie’s seizures gradually returned. Her third surgery
in less than six years was performed, removing more brain tissue
and severing any remaining connections between her left and right
hemispheres. She continues to have periodic seizures, and remains
on four medications.
Julie’s story has had an indelible impact on our entire family.
Our other children, Lindsay and Michael, had childhoods of
uncertainty, worry and fear and, I’m sure, to some degree, embarrassment.
The constant monitoring and care required by Julie’s
special needs took time and attention away from her siblings.
Michael’s childhood was punctuated by extended stays out of state
for Julie’s surgeries, and Lindsay found herself alone at numerous
parent weekends at college. They have always been Julie’s greatest
cheering squad, but we know that Julie is not the only one who has
paid a high price. The physical and mental strain of caring for Julie
often sapped all of our energy and patience.
We were introduced to CURE shortly after Julie’s first surgery.
CURE gave us hope. For the first time we dared to think that
scientists could develop cures for these aberrant neurological explosions
that destroy the quality of life, and even life itself for so many.
I became active in fundraising and reaching out to other
families. In April 2005 Jim testified before Congress on the need
for increased funding for epilepsy research and has joined CURE’s
Research Board, participating in the grant review process. We were
pleased to be Honorary Co-chairmen of CURE’s 2006 Annual Benefit,
and our now yearly ‘Drive for CURE’ golf outing is a product
of the love and support of our friends and extended family.
Lindsay and her husband Brad, and our nieces, Ali and Gigi,
are members of CURE’s Junior Board. Michael gave a speech at his
college about epilepsy and the need to support epilepsy research,
and hopes to make CURE a priority for his fraternity philanthropic
committee.
Our family is grateful for the opportunity to support CURE
and channel our feelings of helplessness into working together for a
cure. It is probably too late for Julie, but hopefully future generations
will not have to suffer the dire effects of this disease. Parents
should not have to lead their children into operating rooms,
knowing they are sacrificing their child’s arm and hand for the mere
chance at seizure control. A family should never have to lose a loved
one to epilepsy.
Susan Schneider
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