Inspired by my daughter Emily and her medical team at NYU, I was planning to run another 26.2 miles in the 2015 New York City Marathon for Team FACES (Finding a Cure for Epilepsy and Seizures) at NYU Langone Medical Center. Unfortunately, recent ankle surgery will prevent me from running, but our family is still determined to raise funds for Epilepsy and get the world that much closer to a cure.
At the age of six, Emily was diagnosed with Absence Epilepsy. It was a seemingly benign condition; most children respond well to medication, and will eventually outgrow it. Unfortunately, Emily was not in that majority, and she, our family, and her medical team at NYU have been working tirelessly to gain control of her seizures.
Under the expert care of Dr. Orrin Devinsky, Emily began a new medication and the modified Ketogenic Diet in June of 2014.
At long last, we are finally seeing the progress for which we have hoped and prayed. Emily's last seen seizure was mid-January 2015. A 48-hour ambulatory EEG showed no seizures, but a few epileptic spikes. She will have repeat EEGs every few months to monitor her progress. In the meantime, each day without a seizure is a gift, and we pray that Emily's seizure- free streak continues. In the best case scenario, she still faces years of blood tests, EEGS, medication and compliance with her very strict diet.
Yet right now, Emily is one of the lucky ones. There are countless adults and children struggling to control their epilepsy, and countless of people around the world who will be diagnosed with Epilepsy each day. FACES' mission, to find a cure for Epilepsy, via cutting-edge research and studies, is our mission too.
When one is diagnosed with Epilepsy, there is much fear, anxiety and confusion, but there is always hope. FACES embodies this hope…for seizure awareness, control, and eventually, a cure.
Thank you for your love and support, and above all, the gift of hope.
To learn more about FACES, please click here to watch our video