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

Published: 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.”

He sought a second opinion at the University of Utah Medical Center. On Dec. 11, 2012, Daren and Leah received the bad news: He had ALS. As Daren puts it, “Basically, (the doctor) told me: ‘You’ll die. Usually within two to five years. There are no treatments. We’re sorry. Go home and get your life in order. Prepare your family.’ ” Says Leah: “It was devastating. We sat there crying. We wondered what do we tell our kids.”

ALS is a neurodegenerative disease in which the body slowly becomes paralyzed, a piece at a time. The muscles used for speech, breathing and swallowing atrophy. In the end, sometimes all a patient can move is his eyes, and yet the mind remains sharp; it is simply trapped in a decaying shell. Most ALS websites report that every 90 minutes someone is diagnosed with ALS, and every 90 minutes someone dies from ALS. They believe more and more people will contract the disease in the future. Its cause and cure are unknown.

As he sat in a restaurant on a recent afternoon, Daren struggled to catch his breath, his shoulders rising and falling with the effort. Because the diaphragm no longer functions, he pushes his hands downward against his legs to push his shoulders up, which in turn helps inflate the lungs.

“It’s an aggressive disease that can destroy your will to live,” he says.

He can walk only 20 to 30 feet and soon will be confined to a wheelchair. His muscles continue to twitch and cramp. His body never relaxes, so he burns calories rapidly — his weight has slipped to 190 — but eating and swallowing are difficult. He works so hard to breathe that he is chronically tired, and yet he can’t sleep because his lungs collapse when he is lying flat on his back, so he rests in a recumbent position on a stack of pillows, takes a sleeping pill and wears a mask that is attached to a machine that forces moistened air down his throat.

He quit his job in March 2013 to spend time with his family. Three days after the diagnosis, the family went to Disneyland. Usually people are diagnosed with ALS later in life, when they no longer have children at home, but Daren and Leah are still raising their daughters, which makes the disease all the more devastating. They chose to tell the girls about the ALS gradually, a piece at a time.

When Lexi finally learned that her father had ALS, she looked it up online but didn’t get far. “I started to read about it, but then I didn’t want to read anymore,” she says. “I don’t want to know what’s going to happen.”

Says Daren: “We cry all the time. From Day 1. Then, at the same time, we say we’re fighters. We’re going to enjoy our time.”

Doug Robinson's columns run on Tuesdays and Wednesdays. Email: drob@deseretnews.com

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