New parents in Kansas City are fighting to save the lives of their newborn twins.
They said the boys have a rare genetic disease that will cost the family millions of dollars to treat.
Amanda Reed gave birth to Eli and Easton on Easter. Five days later, after regular tests, doctors found the disease.
“They sat us down and told us that there were some very concerning labs that came back on both of our boys; for Spinal Muscular Atrophy,” Reed said.
SMA is a disease that prevents muscles from growing and impacts movement in the arms, legs, face, chest, throat and tongue, according to the National Institute of Neurological Disorder and Stroke.
Eventually, the twins won’t be able to walk, swallow or breathe on their own.
“Their life expectancy is one to two years without treatment,” Reed said. “It’s just been a nightmare, an absolute nightmare.”
She said the one-dose treatment that would save the boys’ lives is called Zolgensma, a $2.1 million drug. Both boys need it, so double that.
“These infants that receive that IV infusion, Zolgensma, before their symptoms start, like our boys’ symptoms haven’t started yet, studies show they’re living up to normal lives,” Reed said.
It’s a race against the clock, as symptoms could pop up at any moment
