Sofie’s Journey
In an effort to address the unmet needs for increased education for people with epilepsy and their families, we (Sofie’s Journey) have created the Epilepsy Awareness & Education Expo and Epilepsy Awareness Day at Disneyland.
Our goal is to help educate as many people as possible & teach them to advocate and find the cure they are looking for.
Sofie’s Journey
In an effort to address the unmet needs for increased education for people with epilepsy and their families, we (Sofie’s Journey) have created the Epilepsy Awareness & Education Expo and Epilepsy Awareness Day at Disneyland.
Our goal is to help educate as many people as possible & teach them to advocate and find the cure they are looking for.
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 Sofie’s Journey/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 stores and consulting business and Candy worked representing composers, volunteering at Sofie’s school and with their local special needs group.
Sofie was 5 and a half years old when we noticed what we call 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 her 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 Rabbis, our family, and close friends to UCLA on the big day. We all prayed for this surgery to be Sofie’s cure. Brad added the promise, in prayer, to ensure others would have opportunities like his daughter, and pledged to help other families travel an easier road on their epilepsy journey. Now, 12 years later, Brad Levy & family operate EEG to Go, a full-service, In-Home VEEG monitoring service catering to kids & adults.
As her parents, we are ecstatic that Sofie will celebrate 15 years of seizure freedom this February 27th!! Sofie will graduate from university in May, a path that was not easy. Sofie advocated for herself every step of the way and managed to navigate the college system, earning Honor Roll amongst other accolades. We are so proud of her!
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. The 11th annual Epilepsy Awareness and Education Expo brought folks from 39 states, families from Europe, Australia, Mexico and Canada.
We are determined to make 2024 the biggest & most educational gathering of Epilepsy support ever! Please visit the website and social media pages 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. There weren’t any Facebook pages for epilepsy or brain surgery. 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!
Sofie’s Journey, Inc. is a qualified 501(c)3 tax-exempt organization. (EIN: 47-5662411)
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 Sofie’s Journey/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 stores and consulting business and Candy worked representing composers, volunteering at Sofie’s school and with their local special needs group.
Sofie was 5 and a half years old when we noticed what we call 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 her 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 Rabbis, our family, and close friends to UCLA on the big day. We all prayed for this surgery to be Sofie’s cure. Brad added the promise, in prayer, to ensure others would have opportunities like his daughter, and pledged to help other families travel an easier road on their epilepsy journey. Now, 12 years later, Brad Levy & family operate EEG to Go, a full-service, In-Home VEEG monitoring service catering to kids & adults.
As her parents, we are ecstatic that Sofie will celebrate 15 years of seizure freedom this February 27th!! Sofie will graduate from university in May, a path that was not easy. Sofie advocated for herself every step of the way and managed to navigate the college system, earning Honor Roll amongst other accolades. We are so proud of her!
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. The 11th annual Epilepsy Awareness and Education Expo brought folks from 39 states, families from Europe, Australia, Mexico and Canada.
We are determined to make 2024 the biggest & most educational gathering of Epilepsy support ever! Please visit the website and social media pages 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. There weren’t any Facebook pages for epilepsy or brain surgery. 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!
Sofie’s Journey, Inc. is a qualified 501(c)3 tax-exempt organization. (EIN: 47-5662411)