BENEFITING: Epilepsy Association of Greater Rochester, Inc.
Two Chenango County Residents Run for Epilepsy Awareness on May 6
Epilepsy affects the whole family. When one family member has a seizure, it impacts everyone. Chenango County residents Eileen Sayles can tell you that a seizure turns the world upside down. Eileen’s daughter Madison was diagnosed with epilepsy when she was 2. Ramy’s mother has had epilepsy her entire life.
On Sunday, May 6th, Eileen and Ramy are running in the Greater Binghamton Bridge Run to raise both funds and awareness about epilepsy.
Eileen explains her motivation for running her first 5k, “My daughter has taught me how to be strong and I’m so very proud of her as she’s never showed any fear throughout all of the obstacles that have been placed in front of her. I started running to get into shape. Now I run because of how it makes me feel, because it helps me to be a positive role model for my family, and so I can support the Epilepsy Foundation. I run for the pride that it brings me for supporting a charity that makes such a difference in so many people’s lives.”
Ramy, a seasoned marathon runner, is running in the half-marathon because “I respect both my parents very much for what they endured and for the life lessons that I was taught at a very early age because of my mother’s epilepsy. I proudly support the Epilepsy Foundation and the Children Brain and Tumor Foundation in honor of my parents, Sam & Tara!”
Eileen will always remember the day she noticed her 2-year old, Madison, having a “spell” where Madison looked dazed and was unresponsive to voice or touch. These spells continued and Madison would randomly fall down or walk into things. During a doctor’s visit, Madison had one of her spells and almost fell off of the doctor’s table. Madison’s doctor immediately scheduled an appointment with a pediatric neurologist. One brain scan later and Madison was diagnosed with epilepsy. Madison was immediately put on the anti-seizure medication Keppra which controlled her seizures, but had awful side effects. Eileen’s happy 2-year old became lethargic and extremely irritable overnight. Eileen was extremely concerned, but Madison’s doctors explained that Madison’s body was just getting used to the medication and that the bouts of rage that Madison has would subside over time. Eileen was not satisfied with this answer and spoke to Madison’s pharmacist who noticed that Madison’s dosage was extremely high. Madison had been overmedicated for six months and was diagnosed with Keppra rage.
Madison is now 6 years old and is doing extremely well. She is currently off all seizure medications and is being closely monitored by her doctors. Eileen states, “Madison has now been seizure free for four months and counting! I feel as if I have my baby back. Without the Keppra in her system, it’s as if Madison is back!”
As a five-year old, Ramy remembers his mother having multiple seizures a day, the endless doctor’s visits his parents made, and the terribly invasive and risky brain surgery his mother endured. Tara, Remy’s mother, was diagnosed with epilepsy at the age of 2. She suffered tremendously throughout the years with seizures and migraines. In 1980, when she was 23 and her son Ramy was 5, her seizures started to become much more frequent until they were occurring several times a day. After many doctor visits, the cause of her epilepsy was discovered. Tara was diagnosed with Brain Arteriovenous Malformation (AVM). AVM can cause significant bleeding in the brain. This was occurring in Tara and was the cause of her frequent seizures. Fortunately, Tara was a good candidate for surgery. Ramy’s mom entered the hospital in October of 1981, ended up having two very successful brain surgeries and is doing well today. Tara’s seizures, while not gone, are much more controlled today.
The Epilepsy Foundation of Rochester-Syracuse-Binghamton is very grateful for the support of Eileen and Ramy. Their willingness to share their stories helps us in our mission to lead the fight to stop seizures, find a cure and overcome the challenges created by epilepsy. Epilepsy and seizures still carry stigmas today and only with more public awareness and education can we erase them. Epilepsy is as common as breast cancer and takes as many lives, yet has limited awareness and even more limited funding. According to a new report by the Institute of Medicine, 1 in 26 people will develop epilepsy at some point in their lives. Almost 200,000 people are currently diagnosed with epilepsy in New York State.
EF of RSB provides education, advocacy and services to 22-counties in New York State. In the Binghamton area, we provide epilepsy education, seizure first aid training, case management, and monthly support groups for adults and teens. The support groups meet the third Wednesday of each month (except August) in the Cafeteria Conference Room, Piccano Building of Wilson Memorial Hospital in Johnson City. The May 16 meeting will feature Dr. Anthony Ritaccio, Director of the Epilepsy and Human Brain Mapping Program at the Albany Medical Center. This event is free and open to the public. More details can be found on our website at www.epilepsyUNY.org
For more information about our programs and services in the Binghamton area, please contact Pam Hunter, Regional Director, Organizational Development and Education at (877) 214-7715 or firstname.lastname@example.org. More information can also be found on the web at www.epilepsy-UNY.org or facebook.com/EFofRSB