Although Dustin Miller knew something was wrong, he would have never guessed what was really happening.
The 38-year-old Surfside Beach man had always been active. He was a hard-worker, enjoyed building things, and doing activities with his family. That changed in November of 2021, when he began stumbling and tripping. Those symptoms and others started to occur more often and increased in severity. A while later, he noticed he was having trouble walking in the grocery store with his family.
“I just could’t keep up with them,” he said. “And then one day, I felt like I couldn’t walk anymore. Just out of nowhere...you just lose the ability to hold yourself up.”
Recently, it’s gotten worse.
“I’ve taken a couple of hard falls,” Dustin said.
This past January, Dustin was diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease. ALS is a neurodegenerative disease which results in a progressive loss of motor neurons and muscle function. Most people with ALS lose the ability to walk, dress themselves, function independently, and even speak. The life span of an ALS sufferer is drastically reduced, with the average survival time of three years. Yes, you read that right.
According to als.org, the average a person can expect to survive is three additional years after a diagnosis. About 20 percent of people with ALS live five more years, 10 percent survive an additional 10 years and 5 percent live 20 years or longer.
“We’re praying that’s the case,” Dustin said.
He and his family are looking to beat the odds.
Dustin is married to Katie. The couple has two born children, Kyle, 20, and JasMarie, 16. A baby girl is on the way. Delilah Charlie Miller is due to arrive in late January of 2023.
“To have this baby now is truly a blessing,” Katie said of the child who will bear Dustin’s initials.
While this baby the couple had longed wished for brings hope, the ALS onset is understandably a shock.
“This is all more than overwhelming,” Katie said. “I’m losing by best friend.”
There is no cure for ALS. Dustin is hopeful a couple of new medicines being approved will assist him. He is currently in clinical trails at Johns Hopkins, but may soon transition his care to a closer facility such as Duke or MUSC to reduce travel time.
With a little help from my friends
When Dustin researched ALS and learned the dire statistics, he knew he needed to do all he could to take care of his family. That’s when he realized he needed to accept an offer to organize a benefit in his name.
A “Clays for a Cause” Sporting Clay Shoot Benefit is set for Saturday, October 29, at Back Woods Quail Club in Georgetown, SC. The event is sponsored by Dustin’s church, Palmetto Pointe Church of God, and his former employer, Coastal Asphalt.
Being a very private person, Dustin was initially reluctant to agree to an event bearing his name.
“It’s incredible, but I would rather be the guy that’s helping somebody,” he said.
Dustin is grateful his employer wouldn’t take no for an answer.
“He would never ask for a handout, but he is deserving,” said Mark LaChapelle, Plant Manager and Quality Control Manager at Coastal Asphalt’s Georgetown asphalt plant where Dustin worked until being forced to go on disability in February.
LaChapelle has known Dustin for two decades. The two worked together previously at York Building Products in Pennsylvania.
“Dustin is the kind of dude that never complained. He would come in early and stay late. He worked 65 hours a week for 16 years,” LaChapelle said. “That’s a good man, there.”
Dustin and his family have lived in Horry County for about two years. He and Katie came to Surfside Beach for family vacations for 15 summers before deciding to move permanently. LaChapelle had already made the transition to South Carolina when Dustin gave him a call to look for job prospects.
“He’s really, really talented,” LaChapelle noted.
Katie said she and Dustin sometimes worked three jobs in planning for the move to their golf-cart-ride-away from the beach home.
“We worked very hard to be here,” she said. “We thought we were coming to our dream home.”
It was love at first sight for the Millers. The two married 16 yers ago after only three months of dating. Katie came to the marriage with Kyle and JasMarie and couldn’t be more proud that Dustin is their adopted father.
“He’s quiet, and I speak up. We balance each other perfectly,” she said.
Katie, a former import/export specialist and shipping manager, worked as a General Manager at Dunkin Donuts in Horry County until she left work in April to take care of Dustin.
“We are truly the average family. This is a great devastation. I don’t know who can relate to us,” she admits.
Like her husband, Katie has some difficulty accepting assistance when they are usually the ones helping other people.
“We were always the ones who said, ‘No, let me,’” she explained.
If you would like to sign up to shoot in the event or be a sponsor, go to coastal asphalt.com/clay-shoot or call 843-397-7325.
“If there’s ever a family that deserves our help, it’s Dustin and his family,” said LaChapelle. “As a husband, father, and employee, he’s always doing the right thing.”
The expenses the fundraiser aims to help with include a computer to help Dustin speak if he should lose his voice due to ALS. Thanks to modern technology, Dustin’s voice can be “banked” so that it can be used to help him communicate with his family without sounding like a robot. A wheelchair van would also be helpful to assist in transportation.
“Basically, you lose all muscle function. It’s hard to say how fast it progresses,” Dustin said.
It is well with my soul
Being a champion to help the Miller family with ALS-related expenses isn’t all LaChapelle is in for. The friend, former co-worker and boss has also been diligent to address any spiritual needs and frequently invited the Millers to attend Palmetto Pointe Church of God with him.
“I asked him like six Fridays in a row,” LaChapelle remembers.
LaChapelle would also show up to the Miller home with breakfast biscuits on a Saturday morning. Then, he decided to give Dustin some space.
“He’s very private so I kinda stopped showing up and calling,” LaChapelle said.
Persistence, and time, worked all things out. Dustin called LaChapelle and said he was ready to attend a church service with him. The Millers had been attending a Surfside area place of worship, but had not quite found a home church. The first Sunday at Palmetto Pointe was all it took. On September 4, at a preview service for the church’s reopening of its South Strand campus, Dustin, Katie, and JasMarie took the walk down to the altar and got baptized.
“It just hit us. It hit Katie...she was going up and the Spirit really came over us,” Dustin remembers. “My daughter really felt the love and so did we all.”
South Strand campus pastor Joseph Norris had the privilege to baptize the Miller family.
“Honestly, it was just a preview service. We weren’t officially done setting up. We were under construction,” he said. “You hope and pray somebody responds. It was awesome.”
Dustin said he had always wanted to be baptized, but had never done so. Katie puts it this way.
“We’ve been searching for years. We just weren’t connected,” she said. “We just showed up one day. I don’t know. It just hit us. We all were just crying. It was a miracle.”
LaChapelle missed seeing the miracle firsthand as he was serving as security in the kids ministry area during that service.
“I missed the whole thing. I had no idea my friends were getting baptized,” he said.
LaChapelle didn’t miss the happiness it has led Dustin to.
“You could see him light up,” he said of his friend. “He was full and he is the happiest I’ve seen him in a long time.”
Pastor Norris said its is only right that Palmetto Pointe, under the direct charge of head pastor Jamie Barfield, should take the lead in sponsoring the clay shoot benefit for the Millers.
“I feel like it would be a dereliction of duty to attend to the spiritual matters and neglect the physical,” he said.