Emely Gomez is our angel in heaven. She passed away from a seizure in 2012, age 23. Her identical twin sister Katherine Gomez, father Miguel Gomez and entire family and friends walked together in support of the Epilepsy Foundation to help spread awareness and hope to find a cure for Epilepsy. Emely was and will always be an inspiration.
Emely completed her bachelor’s degree in Speech Language Pathology, was pursuing her Master’s Degree in Special Education and was engaged to be married. Her day time job was teaching kids with special needs for over four years. She received her Zumba instructor licence spreading her positive energy with dancing. Everyone knew Emely with a big smile filled with love for everyone.
Ten years ago, our life was changed in a blink of an eye. Justin was only six months old when he had his first seizure. My husband and I rushed him to the hospital to figure out what had happened to our infant son who was sleeping so peacefully only minutes before a seizure struck. While being transferred to a second hospital, he suffered a second seizure. At the time, my husband and I were terrified for our son’s life, we thought the worst and were uncertain if the seizures might prove fatal or not. After Justin was released from the hospital with no diagnosis, we saw several doctors, none whom were able to give us a prognosis. Many said, “It was an isolated incident and Justin will grow out of it.” As parents, we were eager to find out why those seizures had happened to our son and we needed reassurance that our son was going to be alright. The seizures gave us a reason to sleep with one eye open each night, terrified that a seizure would come unexpectedly.
Eight years later, on December 15th, 2012, Justin woke up in the middle of the night extremely disoriented, and my husband felt that something was not right. A few minutes later, Justin began to have another seizure, one of the worst he’s ever had. He seized for about five minutes and lost consciousness for about fifteen minutes. We needed help immediately and couldn’t bear to experience another nerve-wrecking fright like we had in the past. We finally found a neurologist who was kind and caring and made Justin her top priority. One month later Justin was diagnosed with Idiopathic Epilepsy, or Grand mal seizures.
During the first few months on his medication Justin had minor issues adjusting to the medicine, such as feeling sleepy and occasional crankiness—minor side effects we knew he’d overcome. I’m delighted to say that Justin has been seizure-free for ten months, and we couldn’t be more relieved. The medication has done wonders for our son. Justin has been doing so well in school and lives a happy and normal life just like any ten year old should. He is well aware of his daily routine, taking his medication twice a day to prevent seizures from coming unexpectedly. My son’s story has proven to us that having epilepsy is a serious disorder, but if treated properly children and adults can live normal and happy lives.
Having a child as we all know doesn’t come with a handbook. Our beautiful daughter, Ava Grace was born 32 weeks early weighing in just about 4 lbs. Healthy, for the most part, but failure to thrive. The next year or two was endless doctors for everything from nutrition to services for milestones. She eventually caught up as the say and was a happy, confident, outgoing little girl. Besides the usual tonsils and adenoids we went on raising our daughter as what we knew as “normal”. Our bumpy road was starting to even out and we were getting a break from doctors and specialist.
On a beautiful sunny day in July is when the bumpy road became rocky again. Our little sassy Ava decided she wasn’t going to listen to daddy, as most children. She did not wear her helmet as she rode her skate board, lost control and fell smack in the middle of the forehead. I received the call from my husband as I was at the store preparing to leave in 2 days for a business trip away. “You need to come home I think we need to take Ava for stitches.” Frantic mother I rushed out of the store and went home. The cut was deep, gushing blood and would definitely need some sewing up! Routine ER visit. Cleaned her up, stitched her, vanilla milk shake and we were on our way home.
Next day I needed to go to work to gather some last things for the trip so I decided Ava could come along for the ride. As always she wanted a ponytail. I was gently brushing her hair into a pony when her body weight started to fall on me to the point I almost lost balance. That’s when I realized she was “passing out”. I held her head and watch as she laid there twitching to one side, eyes rolling to the back of her head. The vision will be imprinted forever. It was the scariest day of my life. You learn just how long 30 seconds really is when you are watching someone you love having a seizure. Seemed like forever. Her body went limp as if she was sleeping and then she opened her eyes crying, “What happened to me?” I was calm, and I think it was the adrenaline, but I was able to get her up. She started vomiting. I thought she has a concussion from the skate board fall. I called the pediatrician who then said call an ambulance ASAP. They were on their way. Called my aunt she was the closest by. I was alone, my husband was at least an hour away and I also had my 3 year old. There was no way I’d be able to drive to the hospital and take care of Ava at the same time. A cop showed up first asking a million questions. I felt like I was under a microscope. Then my aunt got there. Where’s the ambulance? Ava was not right, confused, dazed, and the vomiting wasn’t stopping. We decided to drive to the hospital.
They took her immediately in the ER. Tests, blood work, more tests and then about 4 doctors walked in. It was the pediatric neurology team. The questions were intense. Things I wrote off as “normal” childhood nothings were something’s. We were admitted for an overnight stay and the next morning we were again greeted with the news that would change our daughter and our lives: Generalized Seizure Disorder. She had suffered from Grand Mal Seizures. The skate board accident didn’t cause her epilepsy, but it onset the disorder.
She was immediately put on a “cocktail” of medication to “get it right” and under control. She went from a spunky, confident, NO fear child to a child who lives in fear. We did the best we could to assure her to live her life like she has before, but in all honesty, I scared that I could not be there to protect her at all times. That is why I decided to get educated and get involved.
The medication truly helps save our children, but there are sacrifices that come with it like any medication, side effects. We lost our daughter into a deep dark hole. The more I learned through the web sites, support groups, and by participating in the walk and talking with other mothers the more I realized I wasn’t alone. We finally were able to find a med that was good for her through my persistence, than the one she was on. The whole process of feeling “I am not “normal” took its toll on our daughter. She hates herself for having epilepsy. She sees a therapist now and we see glimpses of our Ava, as we knew her, coming alive again.
There is NO cure, but I will NOT allow this to take over her life. This will be a part of her life for a while, if not forever. We need to reduce the stigma. That is why we decided to get involved with the EFMNY. It’s hard to raise empowered and confident little girls. We, her parents and all her supporters will continue to raise awareness to show Ava that no matter what life throws at you, you pick yourself up and overcome the obstacle. There is no such thing as normal.