BY CLIFF SMELLEY
Telegraph Staff Writer
It was hard at first for Clay and Sonya Stack of Starke to see what a rare disease took away from their youngest son, Jack, but they’re now grateful for what he does have.
Jack Stack, a 16-year-old soon-to-be-junior at Bradford High School, has Legg-Calve-Perthes disease, or simply Perthes disease. It has limited what he can do physically, but he can walk (when he’s not recovering from a surgery), but it won’t limit the amount of time he gets to spend on this earth and with loved ones as it’s not terminal, which would be a parent’s concern upon hearing the word “disease.”
Clay admitted that when he first heard of his son’s diagnosis, he was upset.
“I cried, but it could’ve been worse,” Clay said. “That’s what we thought. It’s terrible, it’s bad, it’s unfair, but you know what? It could’ve been 100 times worse. Don’t feel bad. Don’t feel sorry. Let’s be thankful it’s just this, and we’ll get him through it.”
For his part, Jack just takes it in stride, although he’s recently coming off his third surgery to address Perthes’ effect on his body.
“I just wake up and live my life,” Jack said. “I go back to sleep, wake up and live my life.”
Sonya said, “He’s been living with this for so long, that’s all he can do.”
Perthes diagnosis
Jack was 7 when he began complaining about pain in his legs.
“It was a sharp, stabbing pain,” he said.
Clay said he and Sonya chalked it up to growing pains, but it was obvious something else was going on when Jack played in his first little-league baseball game that spring of 2013.
“He hit the ball to the outfield, and he limped to first base,” Clay said. “That wasn’t Jack. Jack was high-strung with speed. He could’ve gotten to second if he didn’t limp. We were like, ‘What’s wrong?’ He just said, ‘My leg’s hurting,’ but he wouldn’t come out of the game. He played the whole game limping.”
Jack said, “It was like you had a leg, but it didn’t work. I’d go to walk on it, but it wouldn’t hold my weight.”
Sonya took Jack to the emergency room in Starke. That was the beginning of several visits to different places, including Nemours Children’s Health in Jacksonville, with doctors at each place they went saying the same thing. They thought Jack had Perthes, but they didn’t have the know-how to help him.
Ultimately, Jack and his family wound up at Nemours in Orlando.
As for the diagnosis, Perthes was something Clay and Sonya had never heard of. It’s a rare hip disorder in young children that affects less than 1 percent of the population and is more common in boys.
The hip is composed of the femoral head (also known as the ball) and the acetabulum, which is the “cup” that fits around the femoral head. In Perthes, the blood supply to the head of the femur is interrupted, which weakens the bone and causes it to deteriorate.
“They don’t know when it happened,” Sonya said, referring to the interruption of the blood supply to Jack’s hip.
As rare as the disease is, the family was surprised that two Starke families they’re friends with had children diagnosed with Perthes.
“They helped us out a lot,” Clay said. “Those two families helped us understand what he was in store for.”
Some children can return to normal activities following treatment. Such was the case with the children of Clay and Sonya’s friends.
“Jack’s been fighting it now for 10 years,” Sonya said.
Surgical procedures
Surgery to correct the problem is invasive and involves cutting the bone. Jack’s parents didn’t want him to have to go through that if he didn’t have to, so the first surgery he underwent was a tenotomy — an outpatient procedure that loosens a tendon in the hip joint. He had to wear Petrie casts — a cast on each leg with a bar in between to hold the legs apart. That took place at Nemours in Orlando in 2013.
“He had to wear that for six to eight weeks,” Sonya said, adding, “He learned to walk on his hands because he couldn’t walk on his feet. He was doing handstands and everything else.”
The tenotomy didn’t fix the problem, which meant Jack had to have an osteotomy, or surgery in which his misshapen bone was reset and secured within his hip socket. That surgery, which occurred in 2018, took the Stack family to Tampa and Shriners Children’s Hospital.
“We have some great friends who got us connected with Shriners,” Clay said. “That was a godsend.”
The goal was that the surgery would be Jack’s last until he became an adult.
“One day, he’ll have to have a full hip replacement,” Clay said. “Every Perthes kid, no matter what — when they’re adults, they generally have to have a hip replacement around the age of 30.”
However, what happened after the 2018 surgery was that the ball of Jack’s femur mushroomed and grew outside of the hip socket, which led to Jack being in tremendous pain.
“He started missing a lot of school,” Sonya said. “He couldn’t get up and go. The days he was going, I was having to take him ibuprofen to get him through the day.”
The Shriners doctors referred the family to Orlando Health Arnold Palmer Hospital for Children for Jack’s latest surgery, which occurred this year on March 29. The surgeon shaved the misshapen bone and placed it back in the hip socket, while also removing scar tissue.
Jack admitted that the surgeries have been no big deal for him, saying, “You go to sleep, and you wake up.”
Of course, there’s more to it than that for his parents.
“I wish it was that simple for me,” Clay said. “When your kid goes under, you just want to make sure he gets awake.”
What has been hard for Jack is the non-weight-bearing restrictions placed on him following surgery. He doesn’t like sitting still and not being able to get up on his feet.
“I don’t like watching TV,” Jack said. “I don’t like playing video games. I don’t like sitting inside.”
Clay said, “He’s so go, go, go. Then you have to watch him lay in bed. That’s the hardest thing for me. You know he’s just miserable.”
Perthes itself has placed so many restrictions on Jack’s life, but he hasn’t let it get him down. He’s not able to play baseball, which he would love to do, but he’s found other interests, such as fishing — specifically bass fishing.
“He has about 20 fishing poles,” Clay said. “He’s the fisherman of the family.”
Clay said Jack’s older brothers, Tucker and Trae, will go fishing with Jack and tease him about the fish he catches, saying things like, “That’s a baby.” In reality, though, they’re amazed at the success Jack has.
“They’ll go fishing with him, and he’ll be catching fish after fish,” Clay said. “They’re like, ‘How do you do it?’”
Jack will shoot a basketball in family games of H-O-R-S-E. He also plays golf, which doesn’t bother him as long as he has a cart to ride.
“He played golf his ninth-grade year for the high school,” Clay said. “At the end of the season, it was getting rough on him with all that walking.”
The fact that Jack takes Perthes and everything associated with it in stride makes it easy for his father to crack a joke.
“That’s why I let him have the long hair,” Clay said. “I don’t want to take everything from him.”
Great support
Prior to Jack’s latest surgery, Clay created a Facebook event: Wear Blue for Jack. It encouraged people to post photos of themselves wearing blue on the day of the surgery and adding the hashtags #JackStrong and #PerthesStrong.
Clay, a diehard Georgia Bulldogs fan, noted that blue is the color that represents the Perthes awareness, adding, “It’s not because he’s a stinking Gator.”
In all seriousness, Clay said, “I knew he was going to be sad and hurting for a while. I just wanted him to see how many people loved him.”
As it turned out, a lot of people love him and were thinking of him on the day of his surgery. Clay said approximately 250 people posted photos of themselves wearing blue.
“I had so many people,” said Jack, who spent his five-day hospital stay responding to every post.
Some of those people who posted pictures and words of encouragement have never met Jack. For example, Clay said some of his friends got all their co-workers to wear blue.
“They don’t know this kid,” Clay said. “We had 20 people at this business office in Jacksonville wearing blue for him.”
A woman who’s a friend of the family is a house mom at a University of Florida fraternity. She posted a video of all the fraternity members wearing blue.
“It was amazing,” Sonya said of all the posts. “It gave me chills. It was more than I ever thought would happen. We’re just from this little community, but it turned into this huge ordeal, with everybody supporting us.
“It meant more than you can put into words.”
Clay said, “I was really taken aback. It really helped take my mind off the surgery, too. Those pictures and comments were coming in while we were waiting to hear (of the outcome). I was like, ‘Man, I’m glad I did this just for me.’”
It’s just one example of how so many have kept Jack and his family in their thoughts and prayers. The family’s church, United Methodist of Starke, has been a big support and “helped us through this last surgery majorly,” Clay said. A local motorcycle club heard about Jack and raised money to help the family pay for the surgery.
“We didn’t ask for it,” Clay said. “They heard of Jack’s story and knew we were fixing to have to come out of pocket with some major money.
“It felt pretty good. People went out of their way to raise money for us.”
In one instance, support was shown by taking an opportunity to educate others about Jack’s condition. As a fourth-grader at Southside Elementary School, Jack had days where he needed to be in a wheelchair to get around, but he also had days where he seemed just like any other kid.
“When he didn’t need a wheelchair, he could run faster than all the other kids,” Clay said, adding that would result in his classmates accusing him of faking it when he was in a wheelchair.
Jack’s teacher, Shannon Hughes, held a kind of show-and-tell day devoted to Jack, inviting his parents to participate.
“She had me and Sonya come and — in the front of class with Jack — explain what the disease was and why some days he runs and why some days he has to be in a wheelchair.
“I still love that woman to death. I think she was the greatest teacher ever.”
When Jack had to resort to being in a wheelchair, he would come up with ways of entertaining himself. The wheelchair itself became an activity since other activities were denied him. Clay said Jack would do wheelies and became quite adept at catwalking.
“He’s pretty talented on the wheelchair,” Clay said, adding, “He was having fun with it at least.”
Jack wants nothing to do with a wheelchair now, saying, “If I’m in pain, I’m staying home. I’m not going to high school in a wheelchair.”
Clay said it was kind of cool for Jack to be in a wheelchair in elementary school because he’d have buddies who’d want to push him. In high school, though, Jack said he’d be nothing but a “sitting duck.”
“Now, I’m pretty sure I’d get shoved into the lockers,” Jack said.
Perhaps Jack is misjudging how mischievous his classmates would be. A lot of them have grown up with Jack and know he has Perthes, but in Jack’s mind, he’s just a high school student. He isn’t defined by the rare disease he has.
“I’m very proud of him,” Sonya said. “He doesn’t let it get him down.”
Jack’s not one to dwell on how Perthes will affect his life in the future. As he put it, “I don’t really think about tomorrow.”
“He’s a pretty tough kid,” Clay said. “I’m proud of him for that. He’s never really shown any fear at all.”
