Finding a CURE for Epilepsy with FACES- The Notaris Family Story

21 years ago at the age of 27 my husband had the unfortunate unexpected membership into a club that no one should ever have to be a part of, one that is life altering after it terrorizes you. Until epilepsy entered his life he worked hard to become an attorney and CPA, and he believed anything was attainable if you worked hard enough. In 1995 he found out that was not true. A cure for this debilitating disorder was not fixable with hard work. He was determined to not allow it to control his life but it does and it worsened over time. Fear and hopelessness continued for us as a family when previous treatments didn’t work. We visited many top epilepsy centers all over the country. Doctors felt they could stop his seizures but not without significantly altering his memory leaving him on disability for the rest of his life. It was not until our treatment journey led us to a local hospital at NYU Langone that we hadn’t been to yet where a ray of light was given to us by the beyond brilliant team of Dr. Devinsky, Dr.Doyle and their team. In May of 2013 my husband under went 2 brain surgeries and now in 2016 he continues to be seizure free and his risk factor is the same as anyone. The change in our life as a family is extraordinary, a true miracle and my husband’s life expectancy is no longer cut short by a dangerous disabling disorder. We have 4 kids and he can drive them, participate in skiing, water activities & sports for the first time after 18 years of suffering seizures. Epilepsy has taken us to the darkest places we have ever been and now the light has slowly returned to our family and with this positive transition has also come a deep sense of responsibility to help others in the same or similar fight.
Epilepsy’s prevalence is greater than autism, cerebral palsy, multiple sclerosis and Parkinson's disease all combined. Despite how common it is, it is among the least understood of major chronic medical conditions. Monies are continually needed to support the nonprofit organization founded by Dr. Devinsky, FACES . We have vowed to give back and help raise funds for this organization that helps people live longer safer lives. Since we are not runners my brother Brian Heller is going to run the NYC Marathon for us in support of FACES. We will be there to support him.Days after I asked Brian to run for me, his oldest son was diagnosed with a children’s form of epilepsy and is scheduled to see this brilliant team of doctors. Thankfully his son is expected outgrow his seizure disorder but they still must endure these years that it has come into their lives. It is ironic that the marathon is 26.2 miles. That is approximately how long Jimmy’s seizures lasted, they were typically 26- 30 seconds. Needless to say, the 4.5 hours it will take my brother to run the marathon will feel much shorter than sitting through a seizure and waiting for Jimmy to come to back to us. Thank you for any tax deductible contribution that you can make to FACES.