A Father's Quest to Help His Son

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."