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Wednesday, Sept. 17, 2014

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

By Megan Christensen, Deseret News

Published: Thu, Sept. 4 11:30 a.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.

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.

“I believe that faith was a bedrock for him,” Sedlak said. “One of the things we did to encourage him was send him to bed at night by singing songs about our faith, and I truly believe that was something he really leaned upon.”

Months after her dad’s passing, Sedlak began noticing the Ice Bucket Challenge videos and was grateful to see people donating to a worthy cause.

“I really think the challenge couldn’t happen to a better cause and a more deserving group of patients,” Sedlak said. “I hope the amount of money being raised will turn the tide to finding some kind of cure or at least some kind of therapy.”

Sedlak said she hopes the challenge gives ALS more than just a name.

“The news reports are centering around the fun aspect (of the challenge), and I would challenge the people who are doing the Ice Bucket Challenge to go out and learn about the disease,” Sedlak said.

Several members of the Maddox family have completed the Ice Bucket Challenge, but their strides to improve ALS won’t end there.

On Nov. 12, Steve Maddox’s birthday, all profits earned at Maddox Ranch House will go to support ALS patients and families in northern Utah by supporting the ALS clinic at the University of Utah and the Muscular Dystrophy Association.

Sedlak said their family wants to give back to the people and organizations that helped her dad, especially because ALS is an expensive disease.

“We’ve been talking to my dad’s doctor, and his vision is that the funds we raise can be used to purchase occupational and physical therapy equipment that will be given to patients for free at the clinic,” Sedlak said.

The Maddox family is also setting up a website dedicated to raising funds for the same cause. It will open later this month until mid-November.

“My dad felt very blessed from the outpouring he received when he was sick,” Sedlak said. “We’re excited about it and we hope it’ll be something bigger than we ever imagined.”

Megan Marsden Christensen writes for the Faith and Family sections. She recently graduated from BYU-Idaho with a bachelor's degree in communication.

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1. bbuzzy
, ,
Sept. 5, 2014

My sincere condolences to this family and all who face these kinds of challenges. Because of the Ice Bucket Challenge donations to ALS research are increasing. Donors should be aware that the ALS Association donates to NEALS (Northeast ALS Consortium which uses stem cells from an electively aborted fetus. From their website "These stem cells have been engineered from the spinal cord of a single fetus electively aborted after eight weeks of gestation. The tissue was obtained with the mother's consent." Not, I'm sure with the child's consent. Apparently the ALS Asso. has no qualms about using funds to support this kind of research. There are other places to donate to support those with ALS, just do you own research first.

2. Lisa Maddox Sedlak
Elmhurst, IL,
Sept. 6, 2014

I want to thank Deseret News and Megan Christensen for the chance to tell my Dad's story. You have done a great job of representing the patient and family side of ALS!

I would also like to add some comments I feel are important. My Dad was a devout practicing member of the LDS church. I belong to a different church. Regardless, it was a blessing to sing hymns about the Savior and read scriptures to encourage my Dad during his time of great testing.

Secondly, we did not have a family member with my Dad at all times, but we came very close to this, and often had multiple family members present with him. We would be remiss not to give a huge shout out once again to the many professional caregivers, restaurant employees, friends and neighbors, who were part of the support team. We'll never forget you! We are forever grateful.

Lastly, I want to thank the person who posted the comment about embryonic stem cell research and the search for an ALS cure. This is a serious ethical concern and one of many reasons I urged our family to focus our fundraiser on patient care.

3. bikeboy
Boise, ID,
Sept. 11, 2014

I had a dear friend who contracted ALS, and it was indeed difficult to watch her fade away. It would be nice if some meaningful research is funded through the "Ice Bucket" effort.

"Maddox" is dear to my heart... my parents lived in SLC when they were courting, and Grandpa took his future son-in-law to the restaurant to "impress" him. (This would've been in the early 50s... a while back.) And impress him it did! As it has impressed me on numerous occasions since. I can't always squeeze in a visit to Perry... but when I have time it's consistently a treat.

4. I know it. I Live it. I Love it.
Provo, UT,
Sept. 11, 2014

The Maddox restaurant is one of our best well-kept secret gems in Utah. Visitors may go into the city. But the real stuff is up north. My mouth is already anticipating a visit. See what kind of power these people have?

I didn't know about the ALS, but it's good to see examples of faithful people right now.

5. Brimmer
Wheaton, IL,
yesterday

I have eaten at restaurants all over the world on four continents. My favorite is Maddox. We stop by there everytime we are in Utah. They have a model of food delivery which should be the envy of the world.

Many thanks for getting it right. You will be missed.