There is no cure for any form of muscular dystrophy, but a new treatment is providing hope for some battling a form of the disease called Spinal Muscular Atrophy or SMA.
Jeana Kinley of St. Johns County was the first adult in Florida to receive a drug called Sprinraza, which was approved by the FDA in late 2016. It's the first approved treatment for SMA. Not only has she stopped getting worse, but she has actually been improving and regaining strength.
"I couldn't believe it. I was always told that I would never see a treatment in my lifetime, so to finally have an option, that was an absolute miracle in my eyes," Jeana Kinley said.
"For the last 20-plus years, there's always been this discussion. The cure is just around the corner, the treatment is just around the corner. We've waited and waited for that," said Chris Kinley, Jeana's husband. "It's such a relief and joy to see it's finally here."
Every four months, Chris Kinley brings his wife to Mayo Clinic's Jacksonville campus so she can have a lumbar puncture. It's expensive: $125,000 per injection.
"I have $750,000 of medication in my spine right now," Jeana Kinley said..
We were allowed inside the room as she had her seventh treatment.
"I can take care of myself," Jeana Kinley said. "It was getting to the point that you know that I was starting to question whether I was going to be able to continue to do that so hopefully you know with this, if we can at least stop the progression, even that right there is pretty wonderful."
She noticed the first milestone 17 days after her first treatment when she could grip her hairdryer.
"So see how my fingers go completely around it. That was my first trick. Before that, what happened, let's see if I can even do it. It was like this: My finger was out all the time and I would go like this and it would just fling back up. I could not control that hand. I just couldn't do it, but see. I can hold it now, so just even little stuff like that you know you're trying to dry your hair and get ready you know. It's little things that people don't realize," she said.
And that's not the only improvement she has seen.
"I can stand and let go now, so that's pretty exciting. That had went away," she said.
Jeana's insurance company hasn't covered Spinraza, the medication, so the biotechnology company gifted her the medication. She's seen such success with it they are hiring her to speak to other patients.
"Hope. That's a strong word, and it's something pretty amazing to finally have," Jeana Kinley said.