TAYLORSVILLE, Utah – Utah is now requiring all newborn babies to be screened for Spinal Muscular Atrophy.
SMA is the most common genetic cause of death in infants, which is why doctors say early screening is vital.
“Losing a child is almost unbearable. You never think you're able to get over it,” Elliott and Janell Lewis said.
The Ogden couple lost their daughter Blakely to SMA when she was just 21 months old.
“We've never had any family history whatsoever. It was a complete shock," Lewis said.
The genetic disease destroys motor neurons in the spinal cord over a short period of time and is often irreversible.
About 1 in 10,000 babies are affected.
“Usually babies are normal at birth,” Russell Butterfield said, a neurologist at the University of Utah.
He says by two months, babies lose all motor functions.
In severe cases, it can lead to paralysis or death.
“It's a death sentence to these children," Butterfield said.
A simple genetic test can diagnose the disease.
This week, Utah began screening all newborns for SMA.
“With newborn screening, we'll catch that catastrophic loss of motor neurons before it catches any steam,” Butterfield said.
Butterfield says the screening, along with a treatment newly approved by the FDA called Spiraza, could be a life-changer for the Lewis family.
Ten-month-old Evie was diagnosed with SMA when Janelle was pregnant with her.
Since she began taking the treatment at 12 days old, her muscle strength has improved.
“She's able to sit unsupported," Elliott Lewis said. "She can move. She kinda mimics and she can clap and wave."
The cost of the drug is high; each dose is $150,000.
While it’s not a cure, the payoff is more time with little Evie.
“Our insurance covers it and we're very fortunate to have the opportunity to get her this drug because it's truly incredible,” Elliott Lewis said.
“I can't really put it into words. I just cry about it,” Janell Lewis said.