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On June 13, Lucas Gutherie was determined to attend the 10th annual Lou Gehrig Day at Comerica Park. In fact, he was so determined that he hid the fact that he was not feeling well.

After all, ALS of Michigan had arranged for Lucas to be brought on the field in his wheelchair for a round of applause. Plus, his family had rented a mobility van to transport him to the event. About dozen family members followed in two cars.

But, 15 minutes after arriving at the pregame luncheon in Greektown, an ambulance had to be called.

“I had never seen fear in his eyes before,” said his sister, April Thiel. “It was really scary; he could not breathe at all.”

The pneumonia Lucas had fought off over Easter had returned. Lucas spent 10 days at Henry Ford Hospital, much of it in the Intensive Care Unit. He went home with hospice in place.

On Aug. 22, Lucas Gutherie passed away in his home, becoming the eighth member of the Gutherie family to die from respiratory failure caused by ALS. He was 27, leaving behind a loving wife, Shawna, and a 3-year-old daughter, Layla.

“I think he knew it was the pneumonia again, but he was trying to tough it out it because they were going to bring him out on the field,” Thiel said. “He knew how disappointed we would be.”

CLOSE

Husband and father of three battles ALS

That would be vintage Lucas; powering through for the sake of others. As he said last December in a Detroit News story about the Gutherie family’s fight with an inherited form of amyotrophic lateral sclerosis (ALS): “To be honest, everyone else has got it way more rough than me. They’ve got to watch me go through it.”

Lucas Gutherie wanted his story made public in order to keep the momentum of the ALS Ice Bucket Challenge going. “There were few things more important to him than his family and getting the word out about ALS,” Thiel said.

About 15 percent of all ALS cases are inherited or familial ALS. Families with inherited ALS have a 50-percent chance that each offspring will inherit the gene. At least two dozen other Gutherie descendants are at risk of carrying the gene mutation, including Lucas Gutherie’s daughter, Layla.

A stellar example of humility and acceptance, Lucas said in December, he was willing “to take one for the team,” so long as a cure could be found.

There is no known cause of ALS. No treatment or cure for the terminal neuromuscular disease. Over time, patients become completely paralyzed, unable to speak, swallow, and in the end, breathe. ALS is especially cruel because it does not impair cognitive thinking.

In the Gutherie family, the magnitude of loss cannot be overstated. It is responsible for cutting short the lives of a grandmother and her son, four siblings and a cousin, all ranging in age from 46-61 and spanning three generations.

One of those siblings was Lucas’ father, Charles “Chuck” Gutherie, who died on April 12, 2013, at age 60. A year almost to the day after her husband died, Sallie Gutherie had to face her son Lucas’ diagnosis. Even though she knew it was coming, her son’s death hit especially hard.

“It was even harder than Chuck,” Sallie Gutherie said recently. “I didn’t think it could get any worse, but this was deeper. I guess, because he was my baby. He had his down days, but he really tried to keep upbeat. The worst thing was leaving his little girl behind. I know he hated to leave that baby.”

Before the illness took hold, Lucas was a restaurant manager for Arby’s. He and Shawna married in July 2012 and lived in Oxford.

“He didn’t care about nice clothes or fancy cars or what kind of house he lived in,” Thiel said. “I’m grateful he didn’t waste any of his short life chasing after a lot of things the rest of us think are important.”

From diagnosis to his death, Lucas fought hard, every day, for 16 months. He went from cane to walker to wheelchair. His biggest fear was not being able to communicate. “Even more than death, I think, he really feared losing his voice,” Thiel said.

Thanks to the Team Gleason Foundation (started by Steve Gleason of the New Orleans Saints who was diagnosed with ALS in 2011), Lucas was able to use the Eyegaze Edge, an eye-operated computer that allowed him to communicate. By focusing on an alphabet keypad on a screen, Lucas could “type” what he wanted to say or select pre-programmed phrases. “It really lifted his spirits,” Thiel said.

Using the computer, Lucas wrote a poem:

“Not a word spoken or a moment token, humble I wait/ Not a move thy own, never leave thy home upbeat I wait/ My soul is trapped in a room, I myself the tomb, quietly I wait.”

This month, as in years’ past, the Gutherie family will participate in an ALS of Michigan-sponsored fundraising walk. Lucas’ wife, Shawna Gutherie, donated all of Lucas’ equipment to the ALS of Michigan loan closet. Lucas also donated his body to the University of Michigan Health System for research.

“He said he had to do it, “ said Lucas’ mother. “Not only for Layla’s sake. He wanted to help everybody.”

mkeenan@detroitnews.com

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