INDIANAPOLIS — A local mom is pushing for a rare and deadly disease to be added to Indiana's newborn screening panel.
Duchenne muscular dystrophy affects at least 1 in 5,000 male births each year. Girls can be carriers, too.
13News has been following the journey of one boy with Duchenne for a decade now. When Jordan McLinn was diagnosed, there were no treatments available. His family was told he didn't have much time.
Jordan survived, thanks to "Right to Try," and now there are eight different therapies for Duchenne.
Early detection can make all the difference, so if Duchenne is added to the newborn screening panel, parents could get therapies much sooner.
"So it's more important than ever that parents are able to receive that diagnosis early and not go through a long diagnostic journey, said Laura McLinn, Jordan's mom. "Some of the treatments, in fact our gene therapy that was recently approved is only for 4- and 5-year-olds, so if you're not diagnosed until 6 or 7 or later, you miss your window of opportunity.
So McLinn nominated Duchenne for Indiana's newborn screening panel. Ohio just started screening for it.
The application goes to an advisory committee which recommends conditions to add.
Indiana currently screens babies for more than 50 rare conditions.