EADDL is the combined effort of one family’s thankfulness for their daughter’s recovery (9 years since surgery & her last seizure) and a united community’s passion for winning the fight against epilepsy. Epilepsy Awareness and Education Expo @ The Disneyland Hotel, Anaheim, Ca. November 5th 10am-6pm & November 6th 8am-4:00pm Epilepsy Awareness Day @ The Disneyland Resort November 7, 2018 10am-park closing
Sofie Levy’s school day was almost always cut short. She’d suffer a seizure at noon and spend the rest of the day recovering from it. Medication was no help.
Nine years ago, the now 18 year- old underwent surgery to remove a part of her brain that her parents called “the troublemaker” which stilled the chaotic electrical storms in her head. Sofie’s freedom from seizures inspired Sofie and her folks to create Epilepsy Awareness Day at the Disneyland Resort, which returns November 5-7, 2018 for it’s SIXTH year. EADDL needs to bring this misunderstood condition that will develop in 1 of every 26 people at some point in their lifetime, to light.
This year EADDL will be partnering with the International League Against Epilepsy (ILAE) and working with international and national leaders such as The Danny Did Foundation (DDF), Epilepsy Foundation (EF) and Citizens United for Research in Epilepsy (CURE) for their commitment in uniting the world’s epilepsy communities. This year’s event is expected to draw approximately 100 epilepsy support groups and 2,000 people from many continents, as far away as the UK, Germany, South America, Australia, and to Anaheim, California.
“We are so proud to be partnering with the world recognized governing body for epilepsy advocacy”, says Candy Levy event coordinator, and most importantly Sofie’s Mom.
“When Sofie’s surgeon, Dr. Gary Mathern said that his friends at the ILAE wanted to talk to us about pushing for international unity, we couldn’t wait to be a part.”
Epilepsy affects about 2.2 million Americans, 1 in every 26 people according to the Institute of Medicine of the National Academy of Sciences report. Onset occurs at any age; how ever is most common in children, the elderly and those with traumatic head injuries such as athletes and veterans.
Sofie was just 5 when her parents noticed the brief blank staring spells. “She would just check-out for a second or two, cognitively she was gone,” Brad says. “We couldn’t get a handle on it. We couldn’t tell if she was playing with us. Then she lost speech and we knew something was wrong.” Three years and many treatments later, the seizures only intensified.
Epilepsy is the fourth most common neurological disorder in the U.S. after migraine, stroke and Alzheimer’s disease, yet it receives less than a tenth of the research funding of any one of them. With no big name celebrity spokesperson and with centuries of stigma, epilepsy is in the shadows. Too few talk about it, often doctors miss epilepsy until a convulsion occurs. Epilepsy is not well understood, is under diagnosed, and new treatments are slow to come to market, leaving over 30% of the children with uncontrolled epilepsy.
Sofie was lucky, we could get to the source of the seizures. Stopping the seizures allowed the other parts of her brain to function well so she could live well. Surgery was her best option, it doesn’t always have to the last option. Since surgery she has been seizure free, she is finishing 12th grade in high school, with a special interest in writing, music & ASL. She’s currently learning to drive and she is also studying Neurodiagnostics, so that can soon be working as an EEG Tech. The Levy family business is a private, in-home EEG monitoring service, catering to kids/adults specializing in Autism & Epilepsy.
In addition to gathering folks this November, a new found focus for this event will be to spread awareness all year long with continued updates from physician advisors, blogs, new articles from Epilepsy industry leaders and more, all on our newly updated website and social media presence. “We’re hoping that all of our guests will go back to their home towns and spread the word that there is now an international day for hope. We’re just super excited.” said Brad Levy, event director.
Join us as we flood the Disneyland Park in our purple 2018 EADDL event t-shirts!
This is a follow up to our original story from April 2014. We want to update families, so that people can see that continued progress and success is possible. We also want to update everyone on the growth of Epilepsy Awareness Day at Disneyland and the upcoming event this year. Until our only child, Sofie, developed epilepsy, Brad focused on the family’s retail store and consulting business and Candy worked representing composers, volunteering at Sofie’s school and with their local special needs group.
Sofie as 5 and a half years old when we noticed her first seizure. We are not sure how many went undetected, as they were pretty mild in the beginning. Sofie’s first identified seizure was on Friday, May 20, 2005 just before 6 a.m., a day we will never forget. Sofie woke up, tried to talk, but her speech was “stuck” (for lack of a better word) at first we thought she was playing around, but then we panicked. Like any scared parent, we called 9-1-1. By the time the paramedics arrived, 3 of the longest minutes later, she was yapping up a storm and questioning why there were paramedics in the house! Sofie continued to have seizures despite many medications and many (mis)diagnoses. We sought several opinions and consulted many neurologists, epileptologists and neurosurgeons nationwide.
When Sofie continued to have seizures, 3 and a half years later, the opportunity was presented for Sofie to have a neurosurgical evaluation to see if she was truly a surgical candidate. The evaluation included neuropsychological testing, as well as the Wada Test. We were fortunate enough to be lead to Sofie’s cure: at the pediatric epilepsy surgery program at UCLA Mattel Children’s Hospital with our hero, Dr. Gary Mathern and Dr. Raman Sankar & their team.
We always thought brain surgery was a last option, not understanding that sometimes it’s the best option. Great news, Sofie was a candidate! It was time to explain how fortunate she was to be a surgical candidate, that she wound up a lucky one to have a surgically treatable disorder! Once we understood, our focus changed to helping our child, and now, others like her, with epilepsy. We didn’t realize what a stigma epilepsy carries. Looking back, we were guilty of it too by telling people she had a “seizure disorder.” What is often called seizure disorder is really EPILEPSY, but it doesn’t sound as bad!
Friday, February 27, 2009 became the scariest and at the same time, the best day of our lives. Sofie had a left temporal medial lobectomy; her “troublemaker” was removed. It was the lesion that was the cause of her focal dyscognitive seizures that she used to call her “crookies.” We had agreed that surgery was the best chance for Sofie to be a “regular” kid, but it was still hard to grasp that she was having brain surgery. We had plenty of friends and family question our decision. Some thought we weren’t making the right choice, and to them we can only say we followed our heart, we trusted the tests and the doctors and they didn’t let us down. When the surgery was described as “just another day at the office” we were in awe.
We brought our Rabbi, family and close friends to UCLA on the big day and prayed for this surgery to be Sofie’s cure. Brad added the promise to ensure others would have opportunities like his daughter, and this has happened. Now, nearly 7 years later, Brad Levy & family is EEG to Go, a full service EEG monitoring service catering to kids (& adults) mainly, but not only with special needs.
As her parents, we are ecstatic that Sofie is coming up on 7 years seizure free this February 27th!! Sofie is currently in 10th grade, mastering American Sign language, aerial acrobatics and doing alot of writing. Sofie has a unique connection with younger kids (& older adults) and is currently working on becoming a Neurodiognostic technician and performing EEGs on kids very soon!
As a family, we have further focused our passion for epilepsy awareness, ensuring others are afforded opportunities to receive great epilepsy care by creating EPILEPSY AWARENESS DAY AT DISNEYLAND RESORT, which debuted 11/7/2013. The following day, Candy volunteered to continue as the coordinator for EADDL 2014 and beyond. 2015 was an awesome gathering. Over 1700 people came from Europe, Australia, all across the USA and Canada.
We are determined to make the 2016 event the biggest & most educational gathering of Epilepsy support ever! Please visit the website and Facebook page for current information. We will be updating it often so check back for new info!
We did it; a lot of people do it. We are just trying to give back to those who need a bit of guidance. When we began on Sofie’s Journey, we didn’t know about support groups, I don’t know if there were any Facebook pages for epilepsy or brain surgery, but those times have changed and we are making sure of it.
Please, pass this information on to someone you know.
Whether they are affected (or not) by epilepsy or know someone who is. It can be the best thing you do for them. Please come and support someone you love!
Founded by Chicagoans Mike and Mariann Stanton in January 2010 after the death of their four-year-old son Danny, the Danny Did Foundation works toward its mission to prevent deaths caused by seizures with these main goals in mind: advancing public awareness of Sudden Unexpected Death in Epilepsy (SUDEP), enhancing the SUDEP communication model between medical professionals and families afflicted by seizures, and the mainstreaming of seizure detection and prediction devices that may assist in preventing seizure-related deaths. We view these devices as complimentary to medicinal, surgical and dietary measures that are used to treat seizures.
To achieve our goals, the DDF engages physicians and researchers in the fields of neurology and epileptology; we collaborate with medical technology companies; we consult with epilepsy organizations, and we interact with all those affected by Danny’s story. We ask doctors to talk about SUDEP, and we offer ourselves as an outlet to which doctors can steer patients. We create informational pieces about safety in epilepsy in general and SUDEP in particular. We pursue the latest seizure detection and seizure prediction technologies, and once identified as viable and worthwhile instruments, we work to get these products approved by the United States Food and Drug Administration and then covered by insurance companies. We view these devices as complimentary to medicinal, surgical, and dietary measures that are used to treat seizures, and –with SUDEP accounting from an estimated 20 percent of seizure-related deaths– we believe that there is no such thing as too much prevention.
On Danny’s first day of preschool, he told his teacher “I just want to learn.” Like Danny, we also want to learn. We want to know why a worldwide medical condition is so widely misunderstood by the general public and how it has remained such a riddle to the global medical community. And because epilepsy has taken Danny from us, we will not stop questioning until we know the answer, and to this end we will engage all – from grammar school kids to internationally recognized epilepsy experts– in our effort to prevent another death caused by a seizure.
The Chelsea Hutchison Foundation is a Colorado non-profit corporation formed by Julie and Doug Hutchison to provide help to individuals, particularly children and young adults, who have epilepsy. The main focus is to raise funds to provide grants for seizure-response dogs. These trained companion dogs may be able to detect an oncoming seizure and provide warnings and/or respond after the onset of a seizure Funds are also raised by this Foundation to provide grants for trained seizure movement monitors for those in need across the US. We proudly work with Emfit, SmartWatch and SAMiAlert movement monitors for those in need.
The Chelsea Hutchison Foundation is named for Julie and Doug’s beloved daughter, Chelsea. Chelsea was born September 28, 1992 and brought more joy into our lives than we can express in words. At the age of 11, she began having occasional seizures, until one night when she died in her sleep during a seizure in April of 2009. SUDEP (Sudden Unexpected Death in Epilepsy) was the cause of her death at the age of 16. During the 6 years that Chelsea had seizures, no one ever told the Hutchisons a seizure could take her life, other than through an accidental fall or drowning. As a result of that omission, The Chelsea Hutchison Foundation raises SUDEP Awareness so other families are not blindsided.