Julie’s Story

By: Susan Schneider

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.