I will be running the NYC Full Marathon on November 4, 2018 to bring awareness and funding for research to find a cure for Epilepsy. I run for my son, Keenan, who fights a debilitating rare genetic disease called Microcephaly Capillary Malformation Syndrome with epilepsy at the forefront. Keenan has approximately 100 seizures a day but continues to power through. He spent 196 days in the PICU; 27 of those days in Miami before being air ambulanced to NYULMC in NYC. He underwent 2 brain surgeries just after his 1st birthday, a VNS implantation device, then a G-tube. He is on numerous medications around the clock. Most children of this disease are not expected to make it past the age of 2. For every day that we have Keenan, we have NYULMC to thank. I know in my heart Keenan would want me to do this, to thank Dr. Devinsky, and all of NYULMC who saved him, today and counting. We cherish everyday forward and focus on quality of life rather than quantity. The hope is to raise funding and awareness so other children do not have to go through the journey that Keenan has had to endure. All funds will go to research efforts to find a cure.
With much appreciation, love, & gratitude,
Shawna, Mike and Keenan Camilleri
FACES at NYU Langone Medical Center wrote:
TeamFACES is proud to run in the 2018 TCS New York City Marathon among thousands of others as they race on behalf of important, meaningful causes. Each year our team grows and becomes more successful at spreading epilepsy awareness while completing this 26.2 mile event. We have doubled in size from the 2014 race and look forward to another inspiring year with our runners!
FACES (Finding a Cure for Epilepsy and Seizures) at NYU Langone Health is dedicated to helping people and families living with epilepsy, through research, education, and clinical and community support programs.
Funds raised by each runner will benefit research efforts to improve epilepsy care, educational materials and cost-free seminars, scholarship opportunities, family initiatives, and various events hosted by FACES throughout the year. To learn more about FACES, please click [here](http://www.nyufaces.org/) to watch our video.
Read Latest Update