Mark and Linda Merck started to notice something seemed off with their teenage son, Ben, and it wasn't the usual teen troubles.
The Sheyenne High sophomore started to slur his speech. It would take extra effort to swallow, his body seemed to weaken to the point that even breathing was sometimes difficult. Ben also couldn’t lift his right arm higher than his shoulder.
He was developing serious health problems. The Mercks took him to the doctor, and Ben couldn’t sit up on his own on the exam table.
The Mercks hoped for answers, but none were immediately available. Their 15-year-old son was admitted that night to the hospital. He had numerous scans on his brain and spine, but everything looked fine.
His condition remains mostly unknown. All the Mercks know is Ben is struggling with an undiagnosed neuromuscular condition. His symptoms continue to include muscle weakness and fatigue, labored breathing, slurred speech and difficulty swallowing.
The doctors are treating the symptoms the best they can, but they continue to search for a diagnosis.
Ben's health issues have escalated rapidly since May when the symptoms first appeared. But, last month, Make-A-Wish granted the family a four-day trip to Houston, where Ben was able to meet Houston Rockets guard James Harden, the 2017-18 MVP of the NBA, and enjoy a game.
Trip of a lifetime
Ben's health may not be at its peak, but he’s still on a Houston high.
He was treated to a meet-and-greet at Toyota Center and arrived to the arena in a limo. He met players Harden, Russell Westbrook and Clint Capela. Ben was also gifted a duffel bag packed with T-shirts, a sweatshirt and two pairs of Adidas tennis shoes. But those wouldn’t be the only pairs of shoes he would receive.
The family sat courtside while the NBA team practiced that day. Westbrook, Harden and other Rockets players sat down right by Ben when they took a break.
After the preseason practice, Harden brought Ben into the team’s locker room and handed him a pair of multicolored and autographed size 14 Adidas shoes.
“He’s a very nice guy,” Ben said of Harden.
Ben said he'll never wear them. But the 15-year-old said he will sport the other two pairs he received. One is orange and blue like Sheyenne’s colors; the other is black and white.
The look on Ben's face when he saw the signed shoes was an expression his parents will never forget, Mark said.
The Mercks were invited to the Rockets exhibition game against the Shanghai Sharks from China the next day. They were told their seats were going to be down on the floor behind the basket, but 30 minutes before the game started, a Rockets staff member moved the family right next to Houston’s bench.
Westbrook gave Ben a hug during the game and the coaches were patting him on the head.
Ben's Instagram followers went up after the trip, he said with pride. Mark posted a side-by-side photo of Ben with Harden, and standing only a few inches shorter than him, loads of people commented saying, ‘Boy, he’s tall. Sign him up.’ At 15, Ben stands at just about 6 foot 2 inches.
“It was amazing,” Ben said of the trip.
“Ben wants to go back (to Houston)," Mark said. "My wife was worried about that."
Off the court
The trip allowed for Ben to meet more than just the NBA superstars.
On the day of Ben's adoption, Mark and Linda met his birth father, who was originally from Houston. The family stayed in contact but after time, they lost touch with him and assumed he had moved out of the area.
Once Ben's health began to flounder, the Mercks reached out to his biological parents to rule out any hereditary issues that could be the cause of his illness. The family heard back from Ben's birth father and found he was not only in the area but still had family there. Ben was able to meet his biological father for the first time.
At Mark’s request, Make-A-Wish approved the adding of Ben's birth father as a guest on the trip.
On why the family decided to include him, Mark shrugged and said, “Well, you can never have too much love in your life.”
The Mercks spent an entire day with Ben's biological relatives in Houston. Ben met three aunts, an uncle and a cousin.
“It was pretty good; they were very nice,” Ben said of his relatives.
“The love that he has for Ben is what any father would have,” Mark said of Ben's birth father. “And the family he has down there just loved Ben.”
The big surprise
Ben was surprised with the trip at halftime when Sheyenne faced Fargo North in football at the Fargodome on Sept. 20.
The Mustangs helped escort their longtime teammate Ben across the field to his parents and two Make-A-Wish staff members who were all wearing James Harden beards.
“It was amazing to see, and the smile he had on his face was awesome,” Mark said. “It also just tugged at your heart to see the players rally around him like that, hugging him.”
Ben can still be found on the sidelines during the Sheyenne football games this season.
“The players are like a family,” he said.
Every year, the Mustangs football team serves breakfast at the VFW for a cause. The Sunday, Oct. 6, event benefited Ben.
Ben is still going to school at Sheyenne. He does a feeding during his study hall, and he has to wake up early in the morning to do his breathing therapies. Ben does the therapies once more before bed.
He’s also doing occupational therapy at Sanford a couple of times a week, where they work on his muscles to keep him more mobile.
Ben tires fairly easily, Mark said. Talking is hard; Ben doesn’t chat nearly as much as he used to, which was “a lot,” Ben's dad said as they both chuckled.
Ben's health journey has a lot of unknowns. The Mercks are waiting on some genetic test results, which will be a full genome, hoping those will tell them anything at all about what’s going on with their son. In November, Ben will see doctors at the Mayo Clinic in Rochester, Minn. The family is hoping someone there can figure it out.
It’s been a tough year for the Merck family. Linda, Mark’s wife and Ben's mom, had a stroke earlier this year. She was unable to drive for some time but eventually got her license back, just a day before the couple took Ben to the doctor for the first time.
Ben initially stayed at Sanford Children’s Hospital in Fargo for a week. Doctors thought he could have myasthenia gravis, a motor neuron disease, but it was ruled out as were other conditions that have similar signs and symptoms — muscular dystrophy, spinal muscular atrophy and Kennedy’s disease.
Ben's summer was lost to the hospital. Instead of heading out to the Red River Valley Fair, he and his family headed to Sioux Falls, S.D., a few times to see a pediatric neurologist. After the initial visit, the Mercks had to return for an 11-day hospital stay, where Ben had a feeding tube inserted and was hooked up to therapeutic machines to help with his breathing.
“It was a feeling of shock, because he’s been such a healthy kid,” Mark said. “And as you see new issues, new problems, things getting worse, you just start to feel like, ‘Let’s figure this out, because we need to do something about it.’”