BENEFITING: NYU Langone Medical Center
EVENT DATE: Nov 06, 2016
I will begin by admitting, and for those that know me you will agree, I do not do vulnerable very well. Thirteen years ago we unfortunately received membership in a club no one should have to be a part of. Thirteen years ago my wife Wendy was diagnosed with epilepsy and so began our journey.
Until epilepsy entered our lives I was always guided by the idea that I can work harder, smarter, get up earlier and stay up later to overcome what life threw at me. As a caregiver, this disease quickly beat that out of me. Hope and perseverance was replaced with fear, hopelessness and helplessness.
Our treatment journey led us to New York University Langone Medical Center and Dr. Orrin Devinsky, Kim Menzer, NP and Dr. Werner Doyle. After five years of treatment, in January of 2015, Dr. Doyle performed brain surgery on Wendy with the hope of reducing or even eliminating her seizures. As of this writing, Wendy has been seizure free and we are cautiously optimistic that it will continue.
Epilepsy has taken me to the darkest places I have ever been in my life as a husband, a father, and as a caregiver. The light is slowly returning 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.
Monies are continually needed to support the nonprofit organization founded by Dr. Orrin Devinsky, FACES (Finding a Cure for Epilepsy and Seizures). FACES supports research, scholarships, summer camps, housing and a plethora of patient and research initiatives.
I am competing in the NYC Marathon for all the caregivers that have been and still remain in the fight. I am running for all those that have lost hope at the hands of this unforgiving disease and all of the areas it reaches into in a person’s life. I am also running for those who have lost the fight. I am more specifically running for Larry Smart. Larry Smart lost his daughter Shanae to an accident related to an epileptic seizure in January of 2016. Larry experienced what we as caregivers live in constant fear of happening. May Larry and all the others who have lost loved ones find some peace through those who strive to find answers that will beat this heinous disease.
It is ironic that I will be running a marathon, 26.2 miles. Thirteen years ago I first timed how long Wendy’s seizures lasted and it was 25 to 27 seconds. Needless to say, the four and half hours it will take me to run the marathon will be less painful and feel much shorter than sitting through a seizure and waiting for Wendy to come to back to us.
Thank you for any tax deductible contribution that you can make to FACES. Over 90% of the monies raised for FACES will directly fund activities that impact the cause and the epilepsy community.
Michael, Wendy, Samantha and Gregory Johll