Newborn testing for rare genetic disease is now MO state law
ST. LOUIS – A life-saving intervention for infants diagnosed with a rare genetic disease is now state law. Missouri is the first state in the country to pass legislation that requires newborn screening for spinal muscular atrophy(SMA).
Earlier this month, Governor Greitens signed Senate Bill 50 into law. 5 On Your Side introduces you to one family who lobbied before lawmakers in Jefferson City to make the law a reality.
Tilly McRoberts was born July 1, 2010.
“She was meeting her milestones up until about 8 months,” explained Tilly’s mom, Leslie Derrington. She noticed her daughter wasn’t able to maintain a seated position on her own. As time went on, Tilly was also losing muscular strength.”
That is where Senate Bill 50 comes in.
“The legislation actually mandates that our public health lab in Jefferson City, Missouri will start to screen all newborns for SMA,” said Representative Becky Ruth, Republican representative for District 114, and sponsor of the bill.
Senate Bill 50 requires all newborns be screened for both SMA and MPS II, also known as Hunter Syndrome. The early detection will allow for early intervention.