TULSA, Okla. — Oklahoma native Allie Williams is living her dream of singing opera. But, she wasn’t always sure she’d be here today.
“The doctors told my mom I’d die by six," she said.
Allie was only 18-months old when she was diagnosed with spinal muscular atrophy, a neurological disease that causes muscles to grow weaker as you get older.
“After I didn’t pass at six, they said, 'Well, she’s probably not going to get any older than 15,'" Allie said. "After 15, they said, 'She’s not going to get any older than 20.' After 20, they were just like, 'Okay, well, she’s different.'”
Allie is in a wheelchair, though that didn’t stop her from learning to sing. She received a scholarship to the music program at Oklahoma State University after high school.
“So, it was a dream that I always had, but I didn’t do it," she said.
Instead, Allie earned a graphic art degree from Rogers State University. But, quickly found herself back in music as a long-term substitute teacher for a choir class.
"I got to be a conductor and we did a concert," she said. "And I got to deal with 45 junior high kids. It was the highlight of my life.”
However, Allie’s dreams were still sidetracked. Then, at 34, she decided to go back to OSU and get her music degree. Only around the same time, she began to lose her ability to do basic tasks.
“Being able to put a fork into my mouth," she said. "Lifting up a cup to take a drink.”
Still, Allie carried on. While it took her a couple of years longer than expected, now at 39, she’s on track to graduate this December.
Even more good news for Allie - the FDA recently approved a new drug called Evrysdi. It's the first at-home treatment for people with SMA. For Allie, it’s changing her life, giving her back the motion she lost.
As she prepares for her final recital, Allie hopes her story inspires others.
“I didn’t have that growing up," she said. "And I’m glad that I can be that, not only just for, you know, SMA, but for people with physical disabilities and older people who also want to go back to college.”
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