BENEFITING: NYU Langone Medical Center
EVENT DATE: Nov 02, 2014
Inspired by my daughter Emily and her medical team at NYU, I will be running 26.2 miles in the New York City Marathon for Team FACES, Finding a Cure for Epilepsy and Seizures.
One year ago, we noticed our otherwise healthy Emily “spacing out” many times a day, for spells of about 10-20 seconds each. 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. We were confident that Emily would be in that majority.
Unfortunately, medication after medication failed to control Emily’s seizures and her first grade school year was filled with blood tests and doctors appointments. The strong medications she tried brought with them fatigue, nausea and weight loss. The frequency of seizures increased and on May 31st, she suffered a Grand Mal seziure at home. She lost consciousness for a terrifying five minutes.
Seeking another expert opinion to help turn the tides for Emily, we met with Dr. Orrin Devinsky, Director of the Epilepsy Division at NYU Langone Medical Center. Emily was hospitalized for six nights for further testing and evaluation. The quality of care she received there was second to none and we agreed with the team’s proactive approach to Pediatric Epilepsy. Emily began a new medication and the modified Ketogenic Diet. This diet is extremely restrictive, down to the shampoo and sunscreen she uses, as most products contain carbohydrates. Gone are all of a seven-year-old’s typical foods: cereals, breads, pasta, fruit, vegetables, and sugary treats. Instead Emily eats inordinate amounts of fat…butter, heavy cream and spoonfuls upon spoonfuls of oil.
Emily’s condition and treatment are overwhelming at times, but we are finally seeing some real change, with the unwavering support of Dr. Devinsky, Nurse Practitioner Erin Conway and Dietician Courtney Schnabel. This team is committed to bringing an end to Emily’s seizures, but they never lose sight of her quality of life. We are incredibly grateful to for their knowledgable and and compassion.
In 1994, Dr. Devinsky founded FACES, Finding a Cure for Epilepsy and Seizures. FACES funds cutting-edge research and programs for families living with Epilepsy. Like Dr. Devinsky, we are dreaming of a world without Epilepsy. I can think of no better way to support his medical efforts than to raise funds for this important organization.
Despite the frustration and challenges Emily faces in her life, she remains spunky, brave and up for all things fun. She faces blood tests, hospital stays and EEGS with an unbelievable amount of courage . Her spirit will fuel my training for the New York City Marathon. Like Emily, I will take one step at a time, my eyes on the light at the end of the tunnel.
When a child 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