Narratively

It took me years to realize that despite being born with a rare facial disfigurement, beauty is more than a cold calculation.

It’s hard enough raising a child with an alarming array of symptoms. It’s even harder when doctors can’t figure out what’s wrong.

When a horrifying bacterial infection disfigured my newborn face, my parents abandoned me right there in my hospital bed. The only thing more painful than knowing they left me behind was finding them 38 years later.

My little brother was born with a genetic abnormality so rare and deadly doctors said he’d never leave the hospital. But Patrick became an expert at proving people wrong.

The handful of children born with the devastating disorder known as Batten disease have a life expectancy of only eight to twelve years. Sammie just turned eight.