DEERFIELD — Starting Monday, Illinois newborns will now be tested for Spinal Muscular Atrophy, a condition that leads to death if left untreated, thanks to a law passed by State Senator Julie Morrison (D-Lake Forest). 

“Medical advancements have made all the difference in treating this horrific disease that affects our youngest children,” Morrison said. “Including testing for SMA in regular newborn screenings will ensure treatment can begin immediately to prevent the disease from progressing and causing life-time harm or even death.”

Public Act 100-0864, spearheaded by Morrison in 2017, requires all newborns to be screened for spinal muscular atrophy by July 1, 2020. The Illinois Department of Public Health met the target date, and testing will begin June 29. 

SMA is the most common genetic disorder linked to infant death worldwide and affects between 1 in 6,000 to 1 in 10,000 U.S. births. It is a terminal, degenerative disease that causes severe symptoms that eventually prevent a child from walking, standing, eating, swallowing and even breathing. Most children with the genetic disorder will not live past 18 months.

Fortunately, advances in medical treatment led the FDA to approve the first treatment for SMA in December 2016. The drug is only effective, however, if given early before symptoms fully develop, making testing of paramount importance.

“I am proud Illinois is taking a lead in ensuring all children are tested for a painful disease that can now be treated,” Morrison said.