July 07, 2016
BENEFITING: Epilepsy Foundation of Metropolitan New York
EVENT DATE: Sep 25, 2016
2016 ITL Walk
Welcome to Ava & Adrianna's page for the Into the Light Walk for Epilepsy! Lisa and I want to thank all our friends and family for their continued support. It is our goal to make this year’s Walk our most successful yet! We are blessed to have eachother to lean on through the tough times and cheer eachother through the milestones.
Ava Grace's Story:
Ava in the Summer of 2013 was diagnoised with Grand Mal Seizures. You don't just "catch" epilepsy it's something that you are predispositined to have. It's what triggers it and what trauma or incident brings it on. Ava's was brought on by a fall on her skate board with no helmet. Regardless if it was the fall or not it was going to happen eventually. It took two years to find the right doctors and medication to get Ava to come back to life. When she started this journey she fell into a deep dark hole. The coctail of medication was just not right. She hated life, school and refused to "accept" she had Epilespy. The EFMNY really guided us. They have been an amazing resource and support. They have without hesitation returned EVERY call no matter what it was about. Through them we found our amazing doctor Dr. Judith Bluvstein at New York University Epilepsy Center. She see's Ava as a whole child. With her finding the right medication and the help of family, friends and Ava's wonderful teacher, Mrs. Beebe she's grown and has accepted herself and began to live again. She has recently shared her story with her peers and even has become an little advocate and a resource for others. She loves to horses and riding, creating Art and making goofy videos with friends. I am so proud of the little lady she is becoming and so excited to see how she continues to fight for a cure and spreads awareness.
Adrianna's journey started at 11 months old. As a new mother I had the horrific experience of walking into my daughter’s room and found her seizing in her crib, something I wouldn't wish upon my worst enemy. Due to her age her neurologists did not diagnose her because her brain was not fully grown and the activity was in only a small part of the frontal lobe. Adrianna was basically mute until she was two. There was no goo-goo-ga-ga in our house and her fine and gross motor skills were also affected. She has had OT, PT, and speech services ever since to help in her development. She had been on medication until she was two only experiencing gazing spells and rapid eye movement episodes during that year. She had been seizure free until her third birthday and weaned off of the medication over the course of that year. Her team at Stonybrook felt that she had out grown her seizures now that her brain had fully developed. However two months after her third birthday I received a call from her daycare that she had been acting "off" and was asked to come get her. During my typical 12 min car ride to the facility I received another call that she had a seizure and an ambulance was on its way. January 21, 2016 Adrianna was clinically diagnosed with Epilepsy and her EEG showed activity in all parts of her brain. She continues to receive services and has come such a long way. I am not sure what the future holds for her but I will do everything and anything I need to help her fight. She is a smart, sassy little diva who is meant to do big things! Watching her over come every hurdle in her way has taught me the true meaning of strength. Through the support of family and friends spanning from New York/New Jersey to Florida she can do anything her heart desires.
DATE: SUNDAY, SEPTEMBER 25th
CHECK-IN BEGINS: 9:00 AM
WELCOME & RECOGNITIONS: 10:30 AM
WALK: 11:00 AM
The historic South Street Seaport is where the Walk check-in takes place.
CHECK-IN & EVENT DETAILS
Check-in is located at the Fulton and Water Street entrance to the Seaport. Although it is not required, please bring a copy of your registration confirmation E-mail. The names of all registered Team members and individual walkers will be provided to our check-in staff. If your name has not been pre-registered, you will be directed to on-site registration.
The route is approximately up to 5k along the East River on South Street & Battery Park. There are several resting paces along the way. Walkers are free to stop and turn around at any point. The EFMNY will provide appropriate personnel and signage along the entire route.
DJ, face painting, and more! Fresh water is available.
AFTER THE WALK:
Make a day of it in Lower Manhattan, and enjoy yourself! Area maps will be available, and the Coupon that you are given as you arrive at the Walk will give you vendor discounts.
MORE QUESTIONS: Check out the FAQ tab.