I will be running the NYC Half on March 18, 2018 and 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
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