Friedreich’s AtaxiaPatient Told He Wouldn’t Live To Be 21 Turns 45

September 5, 2015

Ann and Bob Ridgell were caught off guard when doctors said their son would live to be about 21 years old.“We were shocked. Nothing we were seeing would lead you to believe it would progress that far that fast,” Bob Ridgell said of hearing his son had only a decade to live.

Just weeks ago, Kevin Ridgell, who was diagnosed with Friedreich’s ataxia at age 12, once again proved the doctors wrong when he turned 45.

Ridgell’s parents first noticed something might be wrong when he was showing signs of clumsiness at age eight. His symptoms worsened, and four years later he was diagnosed with the rare, genetic, neurodegenerative disorder. Symptoms include muscle weakness and loss of coordination in the arms and legs; impairment of vision, hearing and speech; and aggressive scoliosis.

As a child, Ridgell took the news in stride.

“I was a little kid, so my mind was on the field playing,” Ridgell said. “When they told me, I was like ‘OK, can I go back out and play now?’”

As he got older, he knew it would be a challenge he’d have to deal with.

“I knew something was wrong, something that wasn’t curable, and I did the best I could and was very sociable, but it was very hard,” he said.

By the time he was in high school, Ridgell was walking with a staggering gait, often waiting until the school hallways were clear before stumbling to class while sticking close to the walls for support.

“I started walking around like I was drunk. I couldn’t put one foot in front of the other,” he said. “It was very embarrassing to me. I tried to avoid walking in front of people as much as possible.”

However, he still worked as a lifeguard and swim instructor.

After graduating from high school, he attended Southwest Baptist University in Bolivar, Missouri.

“He really blossomed in college and made some tremendous friends,” Ann Ridgell said.

That’s also the same time the effects of the disorder became more apparent.

During spring break of his freshman year, he fell and broke his leg just above his ankle. Because he already had a broken arm, crutches were not an option, so he began to use a wheelchair and has been using one ever since.

“I knew how people viewed handicapped people, and I knew that I could go home and never come back,” he said. “I wanted to go back (to school), and I had the best time. Everyone welcomed me back and included me.”

On campus he used a golf cart to get around.

“He terrorized the campus,” Ann Ridgell said, jokingly. “We had to tell him he could only have so many people in the back of the cart.”

Kevin Ridgell’s college friends made sure to include him in all the activities, even helping him jump into the river near the school. He also learned to scuba dive, which he has done twice in Hawaii.

After finishing his undergraduate degree in psychology, Ridgell earned a master’s degree at East Central University and was a few credit hours short of another degree.

He also attended Southwestern Theological Seminary in Fort Worth. By that time, he was in his early 30s and started slowing down.

“It was becoming more of a struggle for him, and the use of his hands was getting worse,” Ann Ridgell said.

Now, Kevin Ridgell’s main connection with the world outside of his house is through pictures of the day he sends to friends, often with commentary that he dictates while his parents type for him. He hopes that through his emails he can provide inspiration.

“I was told people with Friedreich’s ataxia are expected to die in their late teens or early 20s. After I turned 21, I wasn’t sure what to do for a while,” he said. “Now I’m 45 and I’m still here. By an act of God I’m still going, and it’s my hope that I can give encouragement and inspiration to some kid growing up out there.

“I want them to know they can survive.”

Thanks to Tulsa World for this story.

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