Children & Youth with Epilepsy

Eve

Eve

A villain attacked our family in December 2013, targeting my almost three year old daughter, Eve. The villain caused her to stumble around, throw up, foam at the mouth and tremor. The doctors said the villain's name was "seizure." The villain's arrival initially brought shock and confusion as we sat in hospital for days doing test after test, waiting for an explanation as to why the villain had arrived. We found out the villain likely had been sent by a boss named "brain lesion." We were released from hospital with a plan of defense should the villian return - they could not say for certain if it would.

We were lulled into a false sense of safety. Eighteen months of calm ended when the villain ambushed us - 40 minutes of awareness lost to its grip. "She should not have brain damage because she did not lose an airway for very long"... The doctor's words will never fade from my memory. Nor will the image of the flashing lights bouncing off the wet pavement as we raced to Sick Kids ICU via Ornge ambulance stop haunting me. Four days more were lost in hospital as Eve recovered from intubation, sedation, and further testing. As she healed in her bed I sat crying, writing an email to our travel agent informing her that our trip to Disney now needed to be cancelled. This was the moment reality set in and I recognized our lives were going to be forever challenged by the villain.

The doctors told us that because the villain had visited twice it meant the villain could be classified under a new name - epilepsy. With that knowledge we could now discuss superheroes to fight back. Long blue pills to keep the villain away, little white pills to battle the villain when it comes. Because without those little white pills the villain seems to grow stronger, morphing into a supervillain called "status epilepticus."

Even when the villain is not visible, it casts a shadow over Eve and our family. She cannot attend French Immersion because she cannot safely ride the bus to get there. Bus companies do not want to risk liability should the villian return and she needs the little white superheroes administered. This is also true of many summer camps. Travel insurance is a nightmare to acquire, limiting our ability to explore.

The world that once held endless possibilities for Eve no longer exists. Her new world has limits, rules, and challenges most children do not face. Her biggest challenges are yet to come. The doctors are recommending brain surgery to stop the villain and reduce the likelihood she will need her superheroes for the rest of her life. The doctors have cautioned us that superheroes can stop working, be forgotten, or weakened by poor choices, leaving Eve defenseless. How does a child comprehend and accept such things when I, the adult, can barely wrap my head around it?

Eve inspired the way I told her story. In Kindergarten we decided it would be a good idea for Eve to talk to her class about having epilepsy so they would understand what might happen should she have a seizure. It was at this time that Eve told me she thinks of her pills as superheroes and the lesion in her brain as being a bad guy they fight against. I remember being amazed at how my five year old could make it all sound so simple.

Unfortunately it is not that simple. I asked Eve, now nine years old, what she would like others to know about epilepsy and seizures. These are her words:

Eve and her family at Katie's Run

"It is scary living with epilepsy because you never know when a seizure is going to happen. I worry about what might trigger a seizure sometimes. I get nervous when I feel tired because it is how I felt before my last seizure. Knowing my parents are near with my rescue medication helps me calm down when I become nervous. I am not able to remember my seizures and it is scary waking up in the hospital not knowing what happened or why I am there.

Taking my medication makes me feel safer but I do not like having to take it every day. I know I am lucky that I do not have seizures all the time like some other people. I often wonder what my life would be like if I did not have epilepsy. We tried going off of my medication and I had a seizure within two months. I do not want to try going off my medication again.

I worry that I won't be able to work as a zoologist, which is what I want to do when I grow up. Epilepsy once prevented me from going on vacation to Disney and other things kids my age can do without worries. I am scared to sleep alone in case I have a seizure in my sleep.

I do not like going to Sick Kids. I hate getting needles and tests and missing school to make the appointments. I do not like some of the things the doctors have said, like suggesting brain surgery. Going to Sick Kids is made easier knowing the doctors are nice and I can talk my parents into getting me a stuffy from the gift shop. I also try to remind myself that once the appointment is over I do not have to return for another year or until my next seizure.

I participate in Katie's Run to raise money that I hope will help researchers find a cure for epilepsy and I run for all the other kids who have epilepsy."

Eve is our epilepsy warrior, fighting an invisible battle, one that is often misunderstood and lonely. We are grateful for Katie's Run as it promotes epilepsy awareness, reduces stigma and raises funds towards research that will help all the epilepsy warriors conquer their seizures.

—Liane and Eve Simmons

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