On February 25, 2002 our little five-pound miracle Gianna Cecelia was born. Arriving four weeks early and the lone survivor of triplets, our beautiful angel brought us the true happiness that every parent prays for. At six-months-old, Gianna had her first seizure. Initially we were told by the pediatrician that it was nothing—that she had simply been moving her eyes in an unusual way—and that we didn’t need to worry. I instinctively knew something was wrong, so we took Gianna to a neurologist. After a quick EEG, the doctor said she was fine; but not a minute after we got home, she suffered a grand mal seizure. We were panic stricken when we were finally told that Gianna had epilepsy.
The feelings of joy Gianna had given us each day were now mixed with feelings of guilt. What did we do? What could we have done to protect her from a life with epilepsy? We took the video camera and began chronicling what would become a journal of Gianna’s life. We kept records of every diet, every medication, and every combination of drugs prescribed. We kept a log of every bite of food she ate, thinking maybe a certain food was to blame. Once the guilt passed and we came to our senses, we realized there was nothing we did—or didn’t do—and nothing we could have done to prevent it. For many children with epilepsy, there simply are no answers.
Gianna has gone on to endure countless seizures and side-effects from treatments. Each day, she faces a number of challenges as her little body fights the four medications she is currently on. For someone so young, the long days of occupational, physical, and speech therapies can be grueling when coupled with the pressures of her Kindergarten and first grade studies. We do our best to teach her to become social and make friends at school.
We had an incredible year when Gianna was about three—almost twelve months passed with relatively few seizures. The episodes she did have were only at night, and for the most part she had control during the day. Even so, ever since she was a baby, Gianna has taken up permanent residency in our bed—it’s the only way we know whether or not she is having a seizure.
In 2006 we were blessed with identical twins. In the beginning, those feelings of guilt returned—how could I take precious time away from Gianna when she needs me so much? In time, the twins have helped me realize that I need to let go a bit. I’ve learned to give Gianna more freedom to do things at her own pace, despite how hard it is to watch her fall over when she is trying to put her pants on, or to remind her to wipe her face when she is covered in food. It still breaks my heart to watch as my two baby daughters watch Gianna having a seizure, yet it almost seems that they understand. They watch over her and give her sweet little kisses when the episode has passed and she has fallen asleep.
Recently Gianna’s daytime seizures have returned, so we are once again searching for answers. We are afraid to leave her alone in her room. We cannot leave her by herself since these seizures are so sudden and so quiet. We call out her name a thousand times a day to check if she is okay. We wonder if what we thought were side-effects from medications have really been seizures.
Gianna has gone through countless doctor visits and hospital stays, batteries of tests, and seizures too numerous to count. Six years later, we still have no answers for what causes the attacks, or how to stop them. After seeking yet another medical opinion, we are currently looking at different options for Gianna. Could she be a candidate for surgery? An implant? Or other medications? We will wait and see, and continue to hope that one day Gianna will be seizure- free.
Along our journey, we have been blessed with meeting some wonderful people who have become dear friends. On May 13, 2008, my husband Anthony and I walked into the Yale Club for CURE’s first annual New York City Benefit. At first we weren’t sure what we were doing there or what to expect—but that night changed our lives forever. Finally we feel as if we are a part of something special—a place where together we can make a difference not only in Gianna’s life, but in the lives of all families affected by the debilitating effects of this disease. It would be easy to sit back and cry. But we choose to fight our hardest for a cure.
As I pray every night for Gianna’s seizures to stop, I also pray for a cure—and for much comfort for the millions of people and their families affected by epilepsy.
Keep up the hope.