BARBOURSVILLE, WV (WOWK) – 38-year-old Thurman Maynard is a husband to Amanda Maynard and father to two children.
A happy family whose lives changed on June 11, 2018.
“You know, they confirmed that he did have ALS, and I thought ‘this is gonna be really bad.’ Because they only give you 2-5 years to live,” Amanda said.
“I really didn’t know what to expect until I asked the doctor about my life. How long did I have left,” Thurman said. “And when he told me two to five years, it was like… oh… you know I didn’t know about this disease.”
Maynard was diagnosed with ALS and was losing control of his muscles on his left side.
Then, on a walk to the beach with his wife, he lost complete control of his legs.
“About three quarters of the way there, I felt like weights on my legs,” he said. “They were so heavy I couldn’t lift them. I couldn’t move them. I told her, ‘look I can’t walk back.’ Then there, I knew walking would be a struggle for myself. Until May 30, I received something in an injection form in my spinal cord that changed my life.”
Maynard was accepted into a stem cell trial experiment called ‘NurOwn.’
“After about three or four weeks I noticed opening water bottles and gatorade bottles was getting so much easier,” he said.
“Whatever he received, it has worked,” said Amanda. “He’s able to lift a shovel full of stuff, he’s able to open water bottles which he couldn’t do with his left hand. He used to ride dirt bikes, couldn’t ride it anymore, he’s able to now pull the clutch in with his left hand.”
“I mean it really got to me emotionally,” Thurman said.
Walking again, riding again- Maynard is now basically back to full health.
“He couldn’t walk a year ago,” Amanda said. “He walked six miles this past weekend.”
And now, the Maynards are working to help others diagnosed with this debilitating disease.
“I had a phone call with Senator Capito about two weeks ago about the bill,” Thurman said.
Right now, ‘NurOwn’ is not approved by the FDA.
The bill would allow patients access to it.
“We’ve got to get this through so we can help save 30,000 patients,” he said.
“They’re dying,” Amanda said. “They’re going to try anything. They want to try these drugs.”
And the worry — time isn’t on their side.
Maynard’s last injection was in September, and although he still feels good, the future is still uncertain.
“We want to hurry up and get this approved,” said Amanda. “So he can start getting this drug again, before the ALS comes back again, and he starts progressing again and getting worse.”
“Doctors can say whatever. Scientists can say whatever. I know what I felt, I know what I had, I know what I lost, and I know what I gained.”
The Maynards are holding a fundraiser on Oct. 24, called ‘Sinking ALS’ — a fishing tournament.
It will be held at Yatesville Lake from 7 a.m. to 3 p.m. $100 entry per boat, and first place wins $2,000.