Disability, Morality, and Family

As a newly minted father, I found an interview with Ian Brown, regarding his son’s cardiofaciocutaneous syndrome, fascinating from a variety of angles.

When he was 8 months old, Walker Brown was diagnosed with cardiofaciocutaneous syndrome (CFC), a rare disorder that left him with severe cognitive, developmental and physical disabilities. By the time he was 3 years old, his father says, his medical chart was 10 pages long.

Now 15, Walker wears diapers and an apparatus on his wrists that prevents him from hitting and scratching himself. Developmentally, his age is between 1 and 3, and he will require constant care for the rest of his life.

“He can’t speak,” his father, Ian Brown, tells Fresh Air‘s Terry Gross. “He can’t do a lot of things — he can’t swallow, so he’s fed through a tube. We don’t know how well he sees or hears. We know he sees and we know he hears, and I think it might be getting a bit better, but because he can’t talk, he just has no way of rationally communicating — so we spent a long time trying to figure out other ways to connect.”

Brown has spent years trying to learn about his son’s condition, a rare genetic mutation that affects only 300 people in the world. He writes about his journey raising Walker — and his mission to find the answers to both medical and philosophical questions — in his new memoir, The Boy in the Moon.

A very deep, emotional, and thought-provoking interview — especially for parents.