Spirit Award: Ava

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.

Spirit Award: Tayla Renee

Tayla 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.

The 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 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.

Community Spotlight: Epilepsy Road Warriors Take on the NYC Marathon

From all of us at EFMNY: Our thoughts are with everyone who is recovering from Hurricane Sandy. Currently, our servers are down and our power is out. You can still access our site. However, our staff are unable to access email. We hope to be up and running as soon as possible.

 

National Epilepsy Awareness Month in Metro New York

As November, National Epilepsy Awareness Month, approaches, we wanted to share some of the ways in which our community is coming together to raise awareness and fund epilepsy education and empowerment programs. You may have read our last post about Team Gabriella and our 1^st Annual Into the Light Walk for Epilepsy Awareness on Saturday, November 10^th in Hudson River Park (NYC). We’re also excited to introduce you to the Epilepsy Road Warriors, our first team to run the NYC Marathon this Sunday, November 4^th. Here are the opening paragraphs of their personal stories. To read their full stories and to learn more about how you can support the team, please visit our team page by clicking HERE or by clicking on each team member’s name below:

Barbara Baldauf, Co-Captain:

The call came early one morning two years ago. My brother, sister-in-law and four year old niece, Siena, were at the hospital. Siena had a grand mal seizure the night before. Paramedics were called and struggled for over 45 minutes to stabilize her. We were stunned. There was no indication prior to this day that she had Epilepsy. There was no family history. This caught us all by surprise.

Bert Chantarat:

I was diagnosed with complex partial epilepsy 16 years ago. Regardless of all the ups and downs along the way, I still consider myself to be very fortunate that my condition is very well controlled with medication. To me, no one is perfectly healthy (really); my brain just likes to tease me with unusual signals once in a while, which leads to a seizure. But with such great support from amazing people in my life, nowadays when it happens I have learned to stop asking what I did wrong to deserve this (okay, I usually bitch about it a little bit), get up and move on.

Jennifer Cunningham, Co-Captain:

As a physician – I always thought I understood Epilepsy. I understood the different seizure types. I understood the medications and their side effects. What I didn’t understand was the impact that Epilepsy has on those that suffer from it. That changed when my beautiful and healthy daughter, Nora, suffered her first grand mal seizure at the age of 5. My life and views on everything changed that day.

Laura Mitchell:

I first joined New York’s epilepsy community as a professional in 2004. In that capacity, I had the opportunity to work with hundreds of individuals and families affected by seizure disorder. I also became close friends with a co-worker whose father was diagnosed with epilepsy when she was six-years-old. Together, we share a commitment to raise epilepsy awareness, so that people affected by seizures have access to the best treatments, services and quality of life possible.

Tara Powers:

First, let me explain the grainy photos. They were taken in May, 1981. That’s me and my father running a 10k when he was 33 and I was 6. His favorite moment was when I bent down and kissed the 4 mile marker. A few months after the race, I woke up one morning to find my father convulsing on the floor. I didn’t know that he had had seizures as a teenager, seizures that were vitually ignored at a time when people didn’t want their families associated with epilepsy. I woke my 10-year-old sister and we called our neighbors.

Alex Rodriguez:

I had my first epileptic seizure when I was seventeen years old. Up until that point, I had never really had any kind of health issue whatsoever. I suddenly went from being able to do basically anything I wanted to being worried about being able to drive, being left alone or even something as mundane as taking a shower. My family was worried sick, and really had no idea as to where to turn or what to expect.

Lindsay Romaine:

On December 9, 2011 the world was granted an angel, my cousin Mary Kate Szokoli. She was 30 years old and lost to her battle with epilepsy. I am running in the NYC marathon on November 4 in honor of her. I have set a goal of raising $2,500 for the Epilepsy Foundation so that others my become aware of the impacts and educated on living with Epilepsy.

Evey Weinberger:

Heres our story I was 13yrs old when I was diagnosed with epilepsy and have been living with it ever since. I am very happy to say that I have been seziure free for 2yrs now. Great right? Well a couple of years ago my little 9yr old sister was diagnosed with epilepsy it crushed my heart I always thought better me then my sisters to have to live with this. Then our other sister had a great idea and started a team called C & E Warriors to encourgae us to walk for the cause on November 10 and to honor her sisters that have to live with this disorder.

Community Spotlight: Walk with Team Gabriella

 UP NEXT: THE EPILEPSY ROAD WARRIORS TAKE ON THE NYC MARATHON

At the Epilepsy Foundation of Metropolitan New York, we have the opportunity to work with the metro area’s leading health providers and advocates as well as extraordinary individuals and families affected by epilepsy. That’s why we’re excited to introduce the first in our Community Spotlight series.  This series will highlight the exciting efforts being made within our community each day to increase epilepsy awareness, education and empowerment. This first edition features the story of Team Gabriella as told by her mother, Karen Mendez.

To join Team Gabriella and EFMNY for the 1st Annual Into the Light Walk for Epilepsy Awareness on Saturday, November 10th in Hudson River Park, visit www.epilepsyintothelight.org. For more information, email tpowers@efmny.org or call 212-677-8550.

Gabriella’s Story by Karen Mendez

On December 27, 2007 God blessed me with a beautiful baby girl who I named Gabriella Ashley Mendez. At the age of 2, Gabriella would have these violent awakening episodes which the doctor said were night terrors. At the time, they believed they were normal and that she would grow out of it. But, I knew that something wasn’t right with my baby. Tests were done and the doctors told me that Gabriella was having seizures! SEIZURES?? I felt like my heart was ripped from my chest! Gabriella was diagnosed with Intractable Epilepsy.  This means that her seizures cannot be controlled. My heart aches every day having to watch Gabriella go through this. As her mother, I feel helpless knowing there’s nothing I can do to help her while she’s trying to fight through the seizures. They say God will not give us more then we can handle. Because God has given me the strength, I WILL continue to fight for Gabriella and other children like my daughter. That’s why I’ve started Team Gabriella with family and friends to walk in the 1^st Annual Into the Light Walk for Epilepsy Awareness on Saturday, November 10^th.  You can join us or make a donation to support Gabriella by visiting www.epilepsyintothelight.org.

 

 

 

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