After Jack Drury was born prematurely, he participated in therapies to help him meet his developmental milestones. Jack thrived at first, but after he turned 2 in June, his development slowed.

“One of the occupational therapists suggested that we actually go see a neurologist,” Jack's father, Tim Drury, 37, of South Amboy, New Jersey, tells TODAY.com. “The neurologist conducted a variety of tests one of which was a genetic test.”

The genetic test revealed Jack had infantile neuroaxonal dystrophy (INAD), a rare genetic disorder that causes children to slowly lose skills they once had. It is progressive and life-limiting with no treatment or cure. The Drury family felt devastated.

“It was horrific,” mom Kelsey Drury, 34, tells TODAY.com. “We thought it was a death sentence.”

The family c

See Full Page