When I wake up, I place my feet on the cool, hardwood floor, and I shuffle to the bathroom, I feed the cat, and make breakfast. I begin my day. A lot of us begin our days this way. By walking.
But not my brother, Gavin.
When I was a college sophomore living in a sorority house at the University of California at Santa Barbara, my parents called to tell me that my baby brother, Gavin, was dying. He had been given a diagnosis of a very rare disease, Aicardi–Goutieres Syndrome.
The doctors immediately placed him in hospice care.
He was 4 months old.