BOISE, Idaho — Spinal Muscular Atrophy, also known as SMA, impacts about one in 11,000 births in the U.S., according to non-profit Cure SMA. It is a rare, progressive genetic disease that impacts the muscles.
Starting on Feb. 1, Idaho's newborn screening program will now test for SMA.
Haley Comer's son Ryder was born with SMA. Our Maggie O'Mara first introduced you to Ryder and his family as a 7's Hero last August, after Ryder received a gene therapy infusion to give him a fighting chance.
“It's pretty amazing, it's actually the most expensive drug in the world, it's over 2.1 million dollars,” Comer said.
She told KTVB Ryder is getting stronger every week. On Wednesday, Idaho Department of Health and Welfare announced newborns will now be screened for the rare genetic condition.
RELATED: Ryder's Story: Middleton baby with rare genetic condition gets a $2.1 million infusion to give him a fighting chance
It is news that has been in the making for more than two years for mom and advocate for children and families with SMA, Hayley McDonald.
“My daughter, her name was Liv and she was born in 2017, and she was diagnosed with SMA type 1, which is the most common and also the most severe form of SMA,” McDonald said.
She told KTVB she knew something was up when her daughter Liv was just two weeks old, but doctors did not diagnose Liv with SMA until she was six weeks old.
“She was struggling to eat on her own, she was struggling to swallow and manage her own secretions," McDonald said. "My daughter ended up passing away from SMA about one day before she would have been seven months old."
Liv passed away in October of 2017.
“It is because of that experience, it is because of the sleepless nights we had waiting to have answers to receive a diagnosis, that I felt so compelled and so did my family and many members of our community, to try and make a difference,” McDonald said.
McDonald started working with the national organization Cure SMA and Idaho Health and Welfare, along with Idaho's legislators. Last year, McDonald and other community members shared their stories and experience with SMA.
“It makes me feel joy that even though my daughter is not a part of my life, how maybe someone else's typical kid may be, I still feel joy that she's still making a difference and connecting people and changing lives and is present with me always,” McDonald said.
With this test, it means families can know if their baby has SMA within the first week of life and can get treatment much faster if need be.
“We're just so grateful that this little boy has a chance at life because of the treatments and I’m excited to see the other lives this will save in the future here in Idaho,” Comer said.
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