Family Wants Newborns Screened For Rare Disease

Posted at 10:22 PM, Jan 01, 2018
and last updated 2018-01-01 23:29:20-05

A Portland family is pushing state lawmakers to make screening for a rare genetic disorder mandatory for all newborns in hopes the move could save other young kids.

Peyton Minor is 17 months old. She was born with a rare condition known as Spinal Muscular Atrophy  or SMA. For this toddler, the diagnosis means she likely won't live past her second birthday.

"It takes away all of her muscles including sitting up, rolling over, talking, eating and even breathing," her mother Hailey said.

But if Peyton had been screened for SMA when she was born  doctors could've give her a procedure which would cure the disease.

Her parents have petitioned lawmakers to make SMA screening standard practice state wide.

"She didn’t deserve this, she hadn’t done nothing and it sucks knowing we could’ve changed it if we would’ve known," Hailey added