A bill named after a newborn baby, who died because a rare disorder wasn't caught in time, is moving forward in the General Assembly.
Everett Boone Johnson was born in August, but he died five days later. He was born on a Saturday, and routine newborn screening was not done until a weekday.
His family claims if it had been done right after he was born, doctors would have caught that he was born with a rare disorder called MCADD. It causes seizures, liver problems and brain damage.
"Within five days, I watched my son take his first and his last breaths,” says Everett’s mother Lauren Johnson. "Having Everett's newborn screening results were paramount in trying to save his life. If we had known he had MCADD just eight hours sooner, we maybe could have prevented this metabolic crisis, and I have to live with that every day."
House Bill 1362 says: the Department of General Services to ensure that Division of Consolidated Laboratory Services testing services related to newborn screening are provided seven days per week to ensure that results of such screenings are available in a timely manner.
It passed the committee for appropriations with 22-0 vote Tuesday afternoon.
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