The blows came one after another. First doctors told Sonia Desormeaux that her son, Jacob, had serious kidney problems. Then they determined he was profoundly deaf and had a severe balance disorder that delayed his ability to walk.
There were frequent bumps and falls — Jacob was always black and blue with bruises. His parents constructed a helmet in order to protect his head.
"When he was a baby I would literally walk around with both arms around him, shielding him from everything," Sonia said. "If there was a corner, the center of his forehead would find it."
Sonia shepherded him from one specialist to another, and cared for him through surgery after surgery. But it wasn't until 2006, when then-7-year-old Jacob began to experience vision loss, that a doctor at New York University was able to link the complicated symptoms. He told Sonia that her son was going blind, and sent her home to look up Usher Syndrome, a rare disease characterized by degenerative hearing and vision loss.