Faith Fortenberry turns 10-years-old next month.
“I like to swim. I swim a lot in the summer and I also like to do arts and crafts. I love to paint and sketch,” Faith said with a big smile.
Those are all typical summer activities for Texas kids, but Faith’s journey has been anything but ordinary.
“She was diagnosed with Type 2 Spinal Muscular Atrophy (or SMA). At that point, she was already 17 months in and had that much time of muscle wasting and there weren’t any approved drugs or treatments,” said Faith’s mom LeeAnn Fortenberry.
Now there are several life-saving treatments that can prevent or stop the disease.
One of those treatments has helped stop the progression of Faith’s SMA, but she has still never walked or stood up on her own.
“Many of our friends who were screened and started treatment within days or weeks of their child’s birth, they don’t really show any symptoms of SMA,” LeeAnn explained.
That’s why SMA was just added to the regular newborn screening exams in the state of Texas.
“In the early onset of Type 1 SMA, the majority don’t reach their first birthday, unfortunately. Children lose the ability to breathe independently, to swallow, to even sit, or ultimately to ever walk,” said Dr. Barry Byrne, the chief medical advisor of the Muscular Dystrophy Association.
The Muscular Dystrophy Association supports causes for an array of muscle disorders, including SMA. The organization fought hard alongside families and advocates to get SMA added to the Texas newborn screening list.
Byrne pointed to the state of Florida where he’s a professor, which added SMA to its routine newborn screenings one year ago.
“Statewide we’ve identified about 30 babies that would have otherwise not had access to early treatment until they were symptomatic and that’s not reversible,” he said.
Hospitals across Texas hospitals just began routinely screening newborns for SMA June 1 and Dr. Byrne expects even bigger results than Florida saw.
“If you look at population, Texas will probably have 15-20% more, so maybe up to 45 children,” he said. “It’s been transformative to identify kids early because some of those treated early with the new therapy have actually begun to walk independently.”
Byrne said SMA was added to the list much faster than some other diseases, mainly because of the huge level of advocacy.
“The Fall of 2019, we actually flew to DC and met with several of our representatives about how important it is,” LeeAnn said. “If you’re screened day one, you know what you’re dealing with and get a plan in place before things get so tragic. A lot of kids do lose their lives before they know what they have.”
Seeing her advocacy pay off means the world to Faith.
“At my age, they could be really walking good by now and it could be like they never really had SMA. I think that’s really cool,” Faith said.
She’s thrilled to know more SMA babies will now be saved with a simple, readily available DNA test.