“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.