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Maddox restaurant owner's family discusses his ALS battle, reliance on LDS faith

Published: Thursday, Sept. 4 2014 11:30 a.m. MDT

Updated: Wednesday, Sept. 10 2014 1:23 p.m. MDT

The Maddox family poses for a picture in snowy northern Utah. Steve Maddox, former owner of Maddox Ranch House in Perry, Utah passed away from ALS last October.

Jon Williams Photography

“You have 24 hours.”

These daunting words precede what may seem a painful endeavor for social media users nominated to take the ALS Ice Bucket Challenge, but for the Maddox family, ALS is more than a quick dip in ice water or a generous donation.

Steve Maddox, former owner of Maddox Ranch House in Perry, Utah, died as a result of ALS, amyotrophic lateral sclerosis, last October after a painful and degenerative diagnosis the previous May.

In April 2013, Maddox was filling out his income tax returns when he noticed it was challenging for him to hold his pen tight enough to write his name.

On May 1, the bad news was delivered.

“I don’t think we’ve gone through anything more difficult as a family,” said Lisa Maddox Sedlak, Steve’s daughter.

Sedlak, who lives in Illinois, was desperate to get to Utah to spend time with her father.

“Accepting that the disease was terminal wasn’t so difficult for him, but as a family it was emotionally devastating,” Sedlak said.

Most of the Maddox family hadn’t previously heard of ALS, but Sedlak was introduced to it in her teens when she saw a man give a presentation with his wife about his experience with the illness.

“I’ll never forget it because he was communicating slowly with his wife through eye blinks and lip-reading,” Sedlak said. “It’s been more than 20 years since I heard that presentation, and I had no idea it would be something that would happen to my own father.”

Fifty percent of Americans didn't know what ALS was before the Ice Bucket Challenge, according to NBC News, but the Maddox family is very familiar with the disease.

Sedlak explained ALS as a condition in which the motor neuron cells start to die.

When those cells die, many muscles, including limbs and vocal chords, are no longer able to move.

Eventually, the person with ALS is unable to breathe.

“We kind of thought he’d lose his mobility, but we weren’t expecting that it was going to be very physically painful,” Sedlak said. “But in my dad’s case, he did have some things happen to him that caused him quite a bit of physical pain, and it was really hard to watch him go through that.”

As Maddox’s disease progressed aggressively, he couldn’t eat solid foods, which was one of the hardest parts of the illness for the former restaurant owner.

“For a family like ours that has grown up around food and served it to families, food is very important to us,” Sedlak said. “I remember giving him some of the last food that he ate from his restaurant, and you could just see the longing in his eyes to chew a Maddox steak. I dipped a Maddox roll in the juices of the steak I was eating, and it was a bite of heaven for him.”

Although they hired medical professionals to care for Maddox, his family rallied around him, and at least one family member was with him constantly during his last few months.

“If there was any kind of silver lining, it would be that it was bringing us closer together, and it was really good for my dad that he could see we loved him,” Sedlak said.

Maddox, who was a member of The Church of Jesus Christ of Latter-day Saints, relied on his faith throughout his illness.

Sedlak said he often talked about being sure he would leave this life for another life in heaven and that he’d be able to see his mother and father again.

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