2014 June | Epilepsy NYC - Epilepsy Foundation of Metropolitan New York

Spirit Award: Emely

EmelyEmely 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.

Spirit Award: Justin

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.”Justin 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.

Spirit Award: Ava

AvaHaving 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.

Spirit Award: Tayla Renee

Tayla ReneeTayla Renee was born May 25, 2012; at 7lbs 11ozs and she instantly became the biggest piece of my heart. I remember thinking to myself, after the nurse handed her to me, that there is no way this beautiful little baby came from me. With straight long black hair, the most amazingly shaped eyes and beautiful long eyelashes, she instantly became a favorite in the nursery. The joy of having a healthy baby came to an abrupt end in the nursery after finding out that Tayla was suffering from seizures. For the next 18 months, we spent many days and nights in and out of Long Island Jewish Children’s Hospital, until we lost her.

The time that Tayla was here with us, in spite of the seizures, was one of the best times of my life. Caring for her was my top priority and required my full attention and all sacrifices that I made were done with love and devotion for my little angel. Although she was incapable of speech, movement and therefore unable to express her feelings, I learned to interpret her needs. I pray and believe that my actions brought her comfort and happiness in spite of her situation.

With all my heart and everything I am, I will always love and remember Tayla for being the best part of my life and giving me those wonderful 18 months with her. She allowed me to experience a love like no other and I miss her tremendously. No matter where I go or what I do I will never forget Tayla Renee, Mommy’s Little Ladybug.

Spirit Award: Donovan

On June 10th 2009 our beautiful baby boy was born! From day one he has brought so much joy, love and laughter to our family. On January 7th 2013 Donovan had his 1st seizure which was diagnosed as “nothing”. After spending 4 days in the hospital, a C.A.T scan, MRI, and a 4 day EEG. He tested normal! 7 weeks later he made some funny noises so we took him to a different E.R. There we were told that the noises he was making were caused by seizures. He had 7 seizures, followed by another 5 day stay and a 5 day EEG, which was also normal and showed no signs of seizures. We decided to start him on medication.

DonovanThe Medication did not work well with him and we took him off after 6 weeks, after doing 4 more EEG’s which showed “Nothing”. On June 5th he had another cluster of seizures, consisting of 3 to 10 clusters. In the E.R. he had a 20 minute seizure that the doctors were unable to control giving him so much medication that he was in ICU for 5 days. He had another EEG, MRI, EKG, ECHO exam and lots of blood work. Again, everything was normal. This time we tried another medication. On August 13 he seized right through the meds. He was hospitalized for the rest of the month. He was then put on more meds totaling his meds to 15 pills a day. On September 28th he had another cluster of seizures which landed him back in the hospital for 6 more days and more tests and blood work. He is now on another combination of meds. Unfortunately the meds have started attacking his liver and kidneys. He has filled a total of approx. 72 tubes of blood, 13 EEG’s, 2 MRI’s and a lot more tests. They have only been able to see one seizure on the EEG. The Doctors have diagnosed him with Complex Partial Epilepsy but we still don’t know what triggers his cluster of seizures. We are very fortunate that we have a great team of Doctors that will stop at nothing to get more answers!!!

Despite all of this he continues to be an amazing big brother to his 3 year old sister Gianna. She is his biggest fan and her only wish is that her brother doesn’t have to go back to the hospital again. He is so Smart, Brave, Sweet, Funny and Caring. Donovan enjoys school, playing with his friends and making everyone laugh. He loves to entertain everyone with his singing and dancing. Looking at him you would never know how much he has been through, He Has Never Lost His Smile!!! : )

Spirit Award: Emma Rose

Emma RoseEmma Rose Mazurek was born in the afternoon of December 28, 2013.  She was born a beautifully healthy baby girl.  She was a full term baby weighing over seven pounds.  Her little hands and feet were miraculously meticulous and so fine in their tininess.  She was the most perfect gift our family could have wished for to celebrate Christmas and the New Year. Less than two months later, on February 14, 2014 – Valentine’s Day – Emma was diagnosed with a rare and debilitating form of infantile epilepsy called Ohtahara’s Syndrome.  No words could have prepared us for this news or what we would soon experience.  Despite the best efforts of top pediatric neurologists in the country, Emma’s seizures could not be controlled.  She suffered literally hundreds of seizures per day.  These seizures eventually left her unable to swallow, eat and even breathe. On March 12, 2014, after only 74 days of life, we lost our precious baby.  She passed away at home in our arms surrounded by her loving family.  We could never have expected to lose Emma so young and so suddenly.  She leaves a hole in our hearts so big that words cannot describe it.  A baby’s cry will never sound the same to us again.  We only console ourselves knowing that Emma Rose won’t suffer any more and that she is in a better place.  But we all just miss her so desperately. During Emma’s short time with us, we gained more than we ever believed possible from having and holding and loving such a wonderfully special and pure little baby.  Emma Rose taught us all lessons in love, courage and even hope.  For us, we not only have our precious memories of Emma, but we also have her enduring legacy, through which we can only hope to help ease the journey of other families who are struggling to cope with their own children’s battle with epilepsy.  We intend to use Emma’s life as a beacon to lead us to raise awareness and funds for research and treatment so that organizations like the Epilepsy Foundation of Metropolitan New York can help to better the lives of all those children afflicted with seizure disorders. Emma Rose continues to be our inspiration and our constant reminder of what really matters in life.  Emma, exquisite and everlasting in our hearts, we love you and will miss you forever.