When 3-year-old Eliza O'Neill enters the room, she steals your heart. Then, she moves on. Like most little girls, she wants to play.



But it was this summer when mom and dad learned that life in the O'Neill household could see fast changes. The news came during a doctor's visit.



"He said, 'You know, I'm not gonna beat around the bush,'" said Eliza's mother Cara O'Neill. "'This is what it is, she's got Sanfilippo Syndrome.'"



Sanfilippo Syndrome is a rare genetic disease. It's a degenerative condition in which the body and mind begin to fail. Eliza could lose the ability to speak, walk, swallow and her organs could fail.



"You basically watch your child lose everything," said Glenn O'Neill. "In front of you."



Glenn and Cara, who is also a pediatrician, are trying to wrap their minds around the fact that Eliza could die in her teens. There is no cure, but there is hope. A clinical trial in Ohio, where testing on mice has cured Sanfilippo Syndrome.



Human testing could begin in late 2014, but the government shutdown has shut down the research that could save Eliza's life.