A couple from Kansas City is fighting to save their newborn twins, who were born with a rare genetic disease that would cost the family millions of dollars to treat.
Doctors diagnosed Eli and Easton, who were born on Easter Sunday, with Spinal Muscular Atrophy after a few days of routine testing.
New parents Amanda and Austin Reed told KCTV-TV that the doctor sat them down and told them that some very concerning lab results came back on both of their boys: Spinal Muscular Atrophy.
"It's just been a nightmare, an absolute nightmare," Amanda Reed said.
Muscle weakness brought on by the genetic disorder SMA can impair a child's ability to sit up, walk, crawl, and regulate their head movements.
According to KidsHealth.org, severe SMA can hinder the muscles used for breathing and swallowing.
Life expectancy can be one to two years without treatment. However, a medication known as Zolgensma may be able to save the babies' lives.
However, a staggering $2.1 million is needed for a one-dose IV medication treatment. Both boys need it so that means the family needs $4.2 milliion becaus the family's insurance plan doesn't cover the drug.
"These infants that receive that IV infusion, Zolgensma, before their symptoms start," Reed said. "Our boys' symptoms haven't started yet, studies show they're living up to normal lives."
Kecia Van Hoft, Reed's stepsister, created a GoFundMe page to raise money to save her newborn nephews. More than $365,000 had been donated by Thursday.
