Utah family seeks to raise ALS awareness with their story and local event

- Draper, Utah (ABC 4 Utah) "Everyday is a struggle. I help him get dressed. I help him eat. I help him walk. but we still just stay positive and keep fighting." Leah Redden is talking about caring for her husband, 49-year-old Daren Redden. Recently Good 4 Utah had a chance to talk to both of them about three things. First, their battle with ALS or amyotrophic lateral sclerosis or Lou Gehrig's disease. Second, Saturday's Kick ALS 5K and party. And third, their message to everyone about slowing down and enjoying life and their families.

"It really started when I was playing basketball. I just couldn't catch my breath. My lungs felt weak." Daren Redden says he didn't know what was going on, but he knew something was really wrong. "I thought I may have had diabetes. They thought I had Lyme Disease. I was tested for West Nile Virus - all kinds of things." Then, in December of 2012, the husband and father also became an ALS patient. "I was there with my wife and it was a huge blow." Leah Redden says "I'll never forget that day. December 11th. We were at the University of Utah ALS clinic. When they told us - it was devastating."

Neurologist Dr. Summer Gibson works with patients who have Amyotrophic Lateral Sclerosis or ALS - and she's a researcher at the University of Utah Medical Center. "I hate giving that diagnosis. It inspires me to do research. It inspires me to live each day." Dr, Gibson says the deadly disease has baffled scientists and doctors for basically a century. "We don't exactly what causes it. We don't know how fast it will progress. We don't know where they might have their symptoms next. Although we know a lot - we know very little." One thing they do know - unlike some forms of cancer or other diseases - there is no cure. It's a source of frustration for doctors and sadly, a death sentence for patients. Dr. Gibson says "We had two heart breakers a couple of years ago - drugs that seem to be very, very positive and very exciting. Then just nothing. Nothing is turning out from them." Daren says "It takes a while to accept that and deal with the reality of a terminal illness where there are no treatments or cures."

The Reddens say, in addition to time, it took a lot of tears to adjust their mind set. Leah says "You just learn to accept it, do the best you can and stay positive." Now the Draper family says instead of focusing what they're losing they're focusing on their family. Daren says "I want take advantage of the moments and create as many memories as I can, as long as can."

Of course, that doesn't make the problems go away. Daren's lung capacity continues to decline and his breathing is labored. His mobility is also on the decline. And the muscles in his hands and the rest of his body continue to deteriorate. "I still have some strength in my right hand, but my left hand is basically dead." He takes a lot of pills to help with the symptoms, but nothing can stop or even slow down the degenerative disease. Still, Daren fights. "I can't expect them to fight in my life if I can't do it myself." And his daughters, 16-year-old Lexi and 13-year-old Livi help in anyway they can.

However, they all know neuromuscular disorders always win. It is a careless killer. That is why they want to share their story. They know they will loose. But until that time they want to take advantage of everyday. Daren says "Our real message to people is don't suffer in silence. Don't try to fight by yourself. You will be amazed at the people will come from places you can't imagine that will step up and want to help you. Your neighbors and family friends will be willing to help you get through this. And as they bless your life - you bless their life." And Redden family wants to highlight the need for more research and awareness about ALS and other neuromuscular disorders. Daren says "We really want people to know about it and get involved and hopefully they will find some treatments and prolong life as they have done with other neurological disorders." It is a message echoed by Dr. Gibson. "We have medications that can be a little bit helpful and a lot of medications that are helpful with symptoms." But she says as for a cure or even drugs that can really slow it down - they don't exist. The Reddens say their Kick ALS 5K is one way of letting people know there is a serious problem and more needs to be done about it. "We just felt we needed to share our story to create an awareness."

The U.S. government allocates four times more research dollars to AIDS than it does for research on brain diseases. And experts say that in ten years - one in 25 people in will diagnosed with a neuro-degenerative disease. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. (Source: ALS Association) In 1939 Lou Gehrig gave his famous retirement speech that put ALS in the spotlight. Seventy-five years later, we still do not have a cure. And only one FDA approved drug exists that may extend survival by a few months.

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