SAINT PAUL, Minn. - Nine-year-old Zachary Forcier of Stillwater was diagnosed with spinal muscular atrophy (SMA) when he was 21 months old.
“We were told that he might not live into adulthood. We were shattered and shaken to the core,” Zachary’s mom Kara says.
Zachery lost his ability to crawl and was losing his ability to swallow.
SMA is the most common cause of early childhood death in the U.S, but on Monday, some hope in Minnesota.
“I have a feeling there's a party going on in heaven today and I'm so excited,” says Carissa Kiester, who lost her daughter to the disease four years ago.
Kiester was on hand Monday at Gillette Children's Specialty Healthcare as the Minnesota Department of Health announced that all babies born in Minnesota will now be screened for SMA.
“We estimate that screening for and treating this disorder could save or greatly improve the lives of somewhere between six and 14 children each year in Minnesota,” said Minnesota Health Commissioner Jan Malcolm.
There's no cure for SMA, but the recently released drug Spinraza can help stop and prevent symptoms, making early detection key.
“We are grateful to you for acknowledging our precious babies, for saying their lives matter and that, as a state, we’re committed to providing them with a bright and beautiful future,” Kiester said.
SMA joins the list of 60 other disorders that newborns are screened for in the state. Minnesota is one of the first in the country to do so. With hope for babies in the future, Zachary and his family remain committed to the present.
“We try really hard to make the best of every single day, to squeeze out as much joy as we can,” says Kara.