Doug Robinson: 'We're going to enjoy our time'

Published: Tuesday, June 10 2014 8:47 p.m. MDT

Updated: Tuesday, June 10 2014 8:47 p.m. MDT

Daren Redden with his family (left to right), Livi, Leah and Lexi.

Shanna Michelle photography

DRAPER — Some people in Daren Redden’s position might choose to suffer in silence. Daren decided he would miss so much if he kept it to himself, and so would those around him.

He talks freely about his battle with ALS — amyotrophic lateral sclerosis, or Lou Gehrig’s disease — because challenges and the way you choose to deal with them are the stuff of life and because they tend to bring out the best in other people.

“It will enrich their lives and yours if you include them in things,” he says.

Hearing that Daren hadn’t taken his family on vacation recently, a neighbor told him, “OK, you’re going on one now,” and wrote a check to cover the cost of a family trip to Mexico. That’s the way it’s been the past 18 months. People are falling all over themselves to help Daren. The neighborhood rallied to put on the Kickin' ALS road race a week ago to raise awareness of the disease in Utah. Sponsors rushed to the cause, and 350 people turned out on short notice for the run. His daughter Lexi pushed Daren in a wheelchair over the 3-mile loop course, and runners high-fived him as they were passing the other way. College pals, neighbors, members of his church congregation, family — they all showed up.

“It felt like we were in heaven for a day,” said Daren.

That’s the thing about sharing this rich, heart-tugging experience with others; everybody lives it with him and pitches in and maybe gains a little perspective. Daren's family — wife Leah and teenage daughters Lexi and Livi — help him eat and get dressed. They laugh together and cry. The tears run freely and frequently in the Redden household. Leah found Lexi crying one night. “I’m still having a hard time with ‘why,’ ” she told her mother, who responded, “I don’t think you get an answer to that one. Life will be hard; it’s how you deal with things.”

Why did a big, strong, otherwise healthy man contract such a disease? He struggles just to talk, walk and breathe. He played linebacker for BYU’s junior varsity football team as a freshman before serving a church mission. The next year BYU won the national championship and he was in Chile.

He became a pharmacist and went to work for Walgreen’s while also creating successful business ventures. It took 10 years and lots of prayers, but he and Leah finally had children. They settled into a neighborhood on the Draper bench. They were prosperous, active, healthy. Life was good.

About four years ago Daren noticed a weakness in his hands. He had difficulty typing and playing piano. During the next few months, his breathing became labored. He was 46 and felt like 76. Then the cramping began — severe spasms in his neck, stomach, back and legs — as did chronic twitching of his muscles, called fasciculation. By early 2012, Daren, who was 6-foot-5, 250 pounds at the time, was losing weight. At first, he considered this good news — who doesn’t need to lose 10 pounds? But the pounds continued to fall off — 20, then 30 — with no change of diet or lifestyle.

“I knew something was wrong then,” he said.

Doctors were baffled. They ventured a variety of diagnoses, but none panned out. Daren underwent carpal tunnel surgery, hoping this accounted for the problem with his hands. After the surgery, Daren asked the surgeon, “When you were looking at the nerve, what did you see?” The surgeon replied, “I don’t know what’s going on with your nervous system, but something is abnormal.”

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