The recent government shutdown has taken its toll on many Americans. But for one little girl in Columbia, S.C., the government shutdown could mean the difference between life and death.
Three-year-old Eliza O’Neill was recently diagnosed with Sanfilippo Syndrome, a rare terminal genetic disease in which the body and mind begin to fail. According to WISTV, Eliza could lose the ability to speak, walk, swallow or her organs could fail.
The shocking news came this summer during a visit to the pediatrician.
“[The doctor] 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.’”
As the government shutdown enters its third day, Eliza’s parents are now facing the possibility of losing their daughter in her teens.
“You basically watch your child lose everything,” said Glenn O’Neill. “In front of you.”
Although there is no cure, a clinical trial in Ohio recently cured mice of Sanfilippo Syndrome. Human testing was scheduled to begin in 2014, but the recent shutdown has postponed the research even longer.
“We don’t have in terms of years,” said Cara. “We think in terms of months and weeks because it could be that much of a difference between when she speaks and she doesn't speak anymore.”
“At night you want to be able to put them in bed and say, “We’re not going to let anything hurt you,’ you know?” said Glenn. “No monsters, they don’t exist. This monster, it does exist. I can’t tell that to Eliza and that is horrible. You know, that’s not in my control.”