Help Eli's Journey with a rare disease called AxD

On July 18th, 2018, our lives were forever changed. Our 18th month old son Eli Kirk Kincaid was diagnosed with Alexander Disease. After suffering from several seizures in the days prior to his diagnoses we took him to Children's Hospital in Seattle. They ran several tests including an MRI which led the Doctors to their diagnoses. Alexanders disease is a rare genetic disorder that effects only 1 in a million kids. Alexander Disease effects white matter in the brain and ultimately damages the myelin sheaths that insulate neurons in the brain. As the damage continues over time the body starts to lose functions and eventually shuts down completely. Eli's Doctors told us they expect him to live to be into his teenage years, which is hard to even write. Through our Journey were led to Philadelphia where we had the pleasure of meeting Dr. Amy Waldman at the Children's Hospital of Philadelphia (CHOP). Dr. Waldman has been working on a cure/treatment for this disease for over ten years. Along with her mentor Dr. Albee Messing they probably know more about this disease than anyone. Eli has since been enrolled in a clinic study for AXD at CHOP and will travel there once a year for follow up appointments. There is hope on the horizon as a clinical trial for humans is likely only a year or two away. There is still a lot to be done however and the driving force is parents and families giving their resources to fund research and future treatments. I have no idea how much money we need to raise but I can tell you that every penny will help change the lives of the kids that are suffering from this terrible disease. Jill and I appreciate you all more than you know and thank you for all your support both financially and emotionally as we walk through this season of life. God is good all time!