Our daughter, Halle, was born with a genetic disorder known as Tuberous Sclerosis Complex (TSC) in March of 2010. After a few months she began to develop complex partial seizures that would dominate her life for the next six months. We tried numerous medications, combination of medications and had her endure week-long stays in NYU’s PICU to understand what we could do to prevent them. Fortunately for us we were referred to Dr. Orrin Devinsky, perhaps the most renowned TS Neurologists in the world and his team at NYU’s Comprehensive Epilepsy Center. With no other options, we decided that at 11 months old, Halle would have brain surgery to remove a tuber (a tumor specific to her disorder) the doctors believed was the main cause of her epileptic episodes.
Although Halle continues on three separate medications daily to prevent seizures still today, we believe she has been seizure free since February of 2011. However, she is one of the more fortunate kids we have come to know these last five and a half years. There are millions of children and adults who deal with some form of epilepsy every day. To combat this epidemic, Dr. Devinsky and his epilepsy team at NYU’s found FACES, a non-profit organization with a primary goal of finding a cure for epilepsy and seizures.
On March 20th I will be running the New York City Half Marathon in support of my little girl, FACES, and millions of people not nearly as fortunate as Halle. My family and I ask that you make a contribution to support this wonderful cause. The money you donate will go directly to the research in finding a cure, education about the disease and support programs for the families like ours that have had to - and in many cases still do - deal with this.
My family and I thank you in advance for your consideration and support.