Bad boned: A local child's battle with a degenerative disease

Karter Scheele's parents enrolled him in a wrestling program when he was 4, hoping to find a fitting outlet for their high-energy boy who was driving his mother crazy. Everyone was happy with the results. His parents got a more docile child, and Karter found an activity he loved. Two years later, Karter was diagnosed with the degenerative joint disease Perthes in his left hip and hasn't wrestled since.

"The blood flow is interrupted to his left hip bone and it doesn't get there fast enough for it to regenerate. The bone ends up becoming like a piece of Swiss cheese with holes in it because it doesn't become dense. And then it breaks down and it collapses," Karter's father, Tim Scheele, said Tuesday from their Hill County home.

The Scheeles have five children. Karter is second oldest to sister Kami, with younger siblings Kace, Kord and Knox.

None of the other Scheele children have been diagnosed with Perthes, or other degenerative diseases. Karter's diagnosis was a surprise for the Scheeles, as well as a learning lesson about a condition they didn't know existed.

At first, the Scheeles thought Karter's symptoms were the result of kids being kids.

"He complained that his groin was hurting. So we thought it was just Karter being Karter - super active - and he just strained his groin at recess," Tim said. "It had been hurting before that but he didn't tell us. ... So we just had him rest.

"And then Fourth of July weekend he got so sore walking down the creek that we had to stop and he wanted me to carry him. We went to the hospital and they correctly diagnosed him here in Havre."

The Scheeles have been working with an orthopedic doctor at Shriner's Hospital in Spokane, Washington. Their goal was to go about six months between visits. But that has yet to happen. The pain sometime becomes so bad their only choice is to visit the doctor.

Since his diagnosis, Karter hasn't been able to do many of the fun things a rambunctious boy his age loves to do.

"I can't run, jump, skip, gallop, or anything high-impact," Karter said somberly.

Perthes, or Legg-Calvé-Perthes syndrome, is a form of epiphyseal ischemic necrosis, a temporary orthopedic disorder of children, in which the growing end of a bone dies and then is gradually replaced over a period of years. The immediate cause of bone death is loss of blood, but experts are unclear about why that happens. Perthes affects the hip and most often begins about the age of six, according to the Encyclopedia Britannica. It is four times more frequent in boys than in girls. Crippling can result, and degenerative joint disease is a complication of middle age. Treatment includes rest and immobilization to prevent injury.

If all goes well, one day, maybe even within a year, he should be able to wrestle again, Karter's parents said. When he gets the OK - the moment his doctor says he has recovered - Karter said he will run laps right then, wherever he may be, even if that's in the doctor's office.

Though hope abounds and the future looks bright, the Scheeles say nothing is certain.

"He should recover - there's always a possibility that something will go wrong," Tim said. "With Perthes, you're making your own road. ... There's no typical road to recovery, every kid is different."

Karter's recovery will also mean Tim can get back to regular grooming habits.

When they first learned Karter had Perthes, there was a lot they didn't know, Tim said.

"We got the story that he's not going to wrestle for awhile. He was really sad about it, and as a way to cheer him up, I told him, 'Well, since you can't wrestle, I won't cut my goatee until you can wrestle,'" Tim said. "I knew it was going to be awhile, but I didn't really think the process through that we're talking years."

"And I wasn't consulted on that," Laura interjected.

Aside from when a few hairs were accidentally burned while he was welding, Tim's goatee hasn't been trimmed since the pact was made. He said he looks forward to trimming.

Laura has also tries to keep her son's spirits high. She helped him enter the 2018 Perthes Kids Art Contest. She worked with him on a design for a T-shirt. Karter's design, a pair of sunglasses with the writing "Perthes kids have a bright future" around the glasses won first place in the 7-to 10-year-old category.

Pertheskids.org says, "Karter didn't have very good news at his appointments. But as he's come to learn, the arrow needs to be pulled backwards before it can go forwards and he relates that to his Perthes journey. Karter has focused on using this to inspire others by doing simple things like passing out chocolate bunnies to others at the hospital or raising $2,000 for books. Karter keeps looking for different ways to make not only his future bright, but others' too. He stays positive through the pain and wants others to also."

The chocolate bunnies and the book fundraising have been other ways to stay positive, ways to get his mind off himself and onto others, his parents said.

The lifestyle restrictions haven't been exclusive to Karter. The family as a whole must take his limitations into consideration.

"We definitely vacation differently. Birthday parties are different - there's always something to think about regarding activity," Laura said. "We like to go skiing in the winter - we're not able to do that. ... We'd like to go to Disney Land, but we're just not sure if he can do the long days."

In addition to a recovery that looks promising, an upcoming camp where he will be able to spend time with others with Perthes is something else he looks forward to.

The Scheeles are going to try to get Karter to a Perthes camp in California this summer.

"Everything is designed with him and his limitations, all the time. So there is no 'He's different.' They're all the same. No one is excluded from anything. That's been a real motivation," Tim said.

At Perthes camp, there'll be no restrictions, Laura said.