Before 2016, this deadly genetic disease had no treatment. Now that it does, all Utah newborns will be screened, potentially saving 5-6 lives a year.
Janell and Elliot Lewis had no idea there was anything wrong with their first daughter, Blakeley, until weeks after she was born in 2011. That’s when the Ogden couple noticed their new baby hardly moved, Elliot recalled, and that her arms looked “floppy.”
Blakeley was eventually diagnosed with spinal muscular atrophy, or SMA, a rare but usually fatal disease that is the leading genetic cause of death for infants. Like most infants with SMA at the time, Blakeley’s motor functions crumbled, and she died before her second birthday.
There was no treatment to save her. But there is now, after the U.S. Food and Drug Administration approved a drug known as Spinraza in late 2016.