Meet Abby

My name is Abby and I am 14 years old. I have a rare genetic condition called Aicardi Goutieres Syndrome, or AGS-1. When I was diagnosed in 2007 there were only about 40 kids in the world with this progressive, white matter brain disease. My mom teaches 2nd grade at Grace Lutheran in La Plata, MD and is working hard with other parents and doctors to get a drug trial in the US. My dad works for the USAF and my amazing big sister helps take care of me! There is no cure for AGS and several of my friends have passed away. Nobody knows how long I might live, so I just love everybody, every day, and my family thanks you for your prayers, love, and support!