Jackson Kimes goes at life with everything he has.
He’s the kind of kid who works part-time all summer to save up for new hunting equipment and spends spring break volunteering in the Dominican Republic.
But he’s an athlete at heart. And that’s where his passions really shine through.
“Football, baseball, basketball—I live and breathe those,” said Jackson, 16, who goes by Jack.
In 2017, as a 14-year-old freshman, he played on the varsity football team at Mason County Central High School in Scottville, Michigan.
He grew fast, worked hard and looked strong.
Except he wasn’t.
In the fall of his freshman year, Jack began noticing a heaviness and a weakness in his legs.
“It felt like there were weights on my ankles,” he said. “I felt kind of uncoordinated.”
Not wanting to lose his competitive edge, he resolved to work harder at football practice. Any worries about his strength or athleticism he kept mostly to himself, sharing them with only one teammate.
He stayed focused and kept pushing himself.
Soon football season ended and Jack shifted his attention to basketball. He told himself to stay tough, hoping that what he’d experienced on the field wouldn’t follow him onto the court.
A couple of practices in, he felt it again. Weakness in his legs. A slowness and clumsiness that didn’t make sense.
“It was affecting my speed, my quickness, my strength,” he said. “I couldn’t jump. I’d fall. Someone would go to box me out and I’d fall down.”
That’s when he talked with his parents, Lisa and Kevin, about the problems he encountered while exerting himself.
His parents, knowing he was in the middle of a growth spurt, figured his body was simply trying to catch up with his lengthening frame.
“His mom and I were trying to encourage him along, saying, ‘Hey, it’s just sports, it’s OK’ … just trying to build him up that way—never once thinking that there was some disease that was going on in his body,” said Kevin, principal of the district’s upper elementary school.
Jack finished out the 2017-18 basketball season and slid into baseball, again casting aside doubts about his strength.
“I was still feeling things—they just weren’t nearly as bad then,” he said, noting that baseball is a less physically taxing sport.
He excelled on the pitching mound that spring, earning a promotion to the varsity team. All season long, however, his batting was off.
“Every single ball I hit last year, I hit to right field,” he said. “Late on every pitch.” Looking back, he knows his arms were too weak to swing the bat around fast enough.
When summer arrived, he dove into weight training for football, determined to get back on top by logging hours in the weight room.
“I always told myself, there are two ways you can deal with this: You can curl up in a ball and pretend like the world is crashing down, or you can get up, face it and just keep going.”
Jack kept going. He showed up for weightlifting four mornings a week all summer long. But the effort didn’t pay off. By summer’s end, his teammates could outlift him at the bench press by 50 pounds.
“I was spotting him most of the time,” said Kevin, who helps coach the football teams, “and he’d get to his second or third rep and there was just nothing left.”
Always quick to offer an encouraging word, Kevin kept reassuring his son, building him up.
It was during the 2018 football season that Jack’s symptoms exploded. The weakness became too alarming to explain away.
“I mean, now it’s 100 times worse than the year before. I can’t even get through warmups without having to take a break,” he said.
“I’d get hit by the weakest kid on our team and he just would level me. I’d fall running sprints.” His friend Ethan stuck close, helping him to his feet.
Enough was enough. Kevin asked the school’s athletic trainer for advice. That afternoon the trainer watched Jack at practice and came back with an astute question: Had Jack ever been checked for myasthenia gravis?
Not surprisingly, Kevin and Lisa had never heard of the disease—a rare autoimmune neuromuscular disorder that causes weakness in the skeletal muscles. But they knew it was time to see a doctor.
Jack soon met with a sports medicine doctor, who ordered a battery of tests and referred him to a neurologist.
The neurologist not only diagnosed myasthenia gravis but also sent him for a CT scan of his chest. In a quarter of cases, patients with myasthenia gravis also have a thymoma, a tumor of the thymus gland.
The scan revealed a mass in Jack’s thymus the size of a potato. The discovery triggered a quick referral to Elliot Pennington, MD, a pediatric surgeon at Spectrum Health Helen DeVos Children’s Hospital.
Dr. Pennington proposed removing the entire thymus gland via thoracoscopic surgery, a minimally invasive technique similar to laparoscopy.
Because the thymus lies in what the doctor called a “high-stakes real estate part of the body,” near the heart and several major nerves and blood vessels, the surgery would be complex.
The procedure took place early last November. Using three small incisions—one for a camera, two for the surgical instruments—Dr. Pennington completed the thymectomy without complications.
Treatment for the next year or so will require a medication called Mestinon, which blocks the harmful antibodies that myasthenia produces. The hope is that over the coming year, Jack’s disease will go into remission and his muscle weakness will disappear—an improvement that gradually emerges after thymectomy in 80 percent of patients, Dr. Pennington said.
Because Jack’s tumor tested to be a type that could recur in his chest, he follows up with Sharon Smith, MD, a pediatric hematologist-oncologist at Helen DeVos Children’s Hospital.
“We’re going to continue to follow him with CT scans every three months for a while, just to make sure that he does not have a recurrence,” Dr. Pennington.
So far, so good—the first scan came back “clean as a whistle,” Kevin said.
Stronger every day
In the meantime, Jack relies on his medicine and sees his strength building every day.
He’ll never forget the moment he felt the Mestinon kick in for the first time, running drills at football practice a few days before his surgery.
“The biggest kid on our team—I plowed him over, and then I did it again,” he said. Later, doing sprints, he ran faster than he had all year.
The floodgates opened for Jack.
“I just threw my helmet off and I went and hugged my dad and I just cried,” he said. “It was a really big moment for me—to feel like an athlete again. It was pretty amazing. I knew it was the medicine kicking in.”
The moment gave him hope that he could feel like himself again.
Jack has grown a lot through this experience, he said—mentally, emotionally and spiritually.
His parents see it, too.
“We’ve just sensed a maturity and a courage and a toughness about him that I never knew he had. This whole thing has kind of exposed it,” Kevin said. “He’s going to take these lessons and be able to do some things with what he’s learned, and I’m proud of him for that.”
Lisa couldn’t agree more.
“I am beyond proud of how well he has handled this diagnosis,” she said. “I believe he can be an inspiration to some other kids overcoming life challenges.”