Sarah Wilkerson is a Colorado mom and MCADD parent to her son Noah, who was born in 2009. Noah was born on a Friday, and at that time, the state lab responsible for running Noah’s newborn screening test that would identify his MCADD was closed during weekends. This left his life-saving test sample untouched for two days that he didn’t have to spare, and a day before his test results were turned around, Noah passed away.
Since then, Sarah has worked tirelessly to speed up newborn screening test results. In 2013, Noah’s story was featured in an investigative journalism series from the Milwaukee Journal Sentinel called “Deadly Delays,” which influenced a change in federal law in 2014 via the Newborn Screening Saves Lives Reauthorization Act. The bill’s language emphasized timely newborn screening test results. National best practice guidelines for timely tests were created, and Sarah helped influence what was included.
She also helped update Colorado’s newborn screening law in 2018. The Colorado Newborn Screening law now makes sure the state lab stays open a minimum of six days a week regardless of weekends or holidays, brings the state into compliance with national guidelines by adding additional rare diseases the test screens for and creates funding and a far more structured program for newborn hearing tests, among other things.
Sarah continues to work towards comprehensive and timely newborn screening tests across the country. She and her husband Chris have two younger children.