The story of Daniel
Aicardi-Goutiere’s Syndrome 2B
By: Daniel Anastasia
My name is Daniel Anastasia. I’m 19 years old. I’m a writer and a senior at Hopatcong High School. My Mom is named Samantha, my brother is Nick, who is in the Navy and my sister is Amanda, who is an artist. Amanda has the same condition as myself. We call her the queen because she is very demanding. She is a pain in my butt. My Mom takes care of us.
I have AGS, which is a disease that I contracted at birth. AGS is a genetic disease in which the white matter in my brain started to get damaged. Mom first witnessed the symptoms when I was 8 months old.
I didn’t babble, couldn’t talk or walk. It was hard to find a diagnosis because at the time the doctors didn’t know about it. Until I went to the National Institute of Health in Maryland, in November 2012, where Doctor Torro at NIH diagnosed us. Doctor Adeline Vanderver is my current doctor who is researching AGS. I felt good because I know what the disease is now and I am relieved to know what this disease is.
God gave me a gift to not be sick and I have technology to communicate and write creative stories!