Imagine being told that your child has a rare neurodegenerative disorder and it's so rare that it doesn't even have a name. This is the reality for Sam and Ben Kadkhoda's five-year-old son, Eli. With no cure and no treatment, this disease leaves children in a paralysis-like state by age 20 without the ability to walk, eat or move. Hear the Khadkoda’s inspiring story and how one determined mother is making bold moves to single-handedly fund research and spread awareness to make a difference in the lives of those impacted by this disease. Visit standbyeli.org to learn more and donate.