By Jennifer Kotila
DASSEL, COKATO, MN “Tyler’s a beast,” said Jackson Bakeberg, 10, in admiration of the Dassel-Cokato football team’s starting running back and corner, Tyler Boltz, 18.
Jackson looks up to Tyler not only as an excellent athlete, but also one who is successful despite having juvenile rheumatoid arthritis (JRA), which is something the two young athletes have in common.
Jackson is the son of Scott and Sara Bakeberg of Cokato. He has two older brothers, Grant, 16, and Cal, 13; and four foster brothers.
Tyler is the son of Brian and Tammy Boltz of Dassel. He has two older sisters, Brianna, 20, and Alissa, 19.
The cause of JRA is not known, but it is thought to be an autoimmune illness, with the body’s immune system attacking and destroying healthy body tissue, according to the US National Library of Medicine.
It usually occurs before the age of 16, and may start as early as 6 months old.
Bakeberg and Boltz have been diagnosed with systemic (bodywide) JRA, which involves joint swelling or pain, fevers, and rash. It is the least common type, according to the US National Library of Medicine.
Although they share what is known to be a crippling disease, neither of the young athletes allows that to slow them down.
Neither do they use the disease as an excuse. Even their close friends may not know they have JRA, because it’s something they rarely talk about with others.
Jackson has played baseball “since he could walk,” said mother Sara.
He has also been in youth hockey four years, currently playing on the Litchfield-Dassel-Cokato Youth Hockey Squirt A team.
Jackson also likes to play golf, and would like to try his hand at football someday.
“He has to be active, it’s the best thing for him,” Sara said. “The longer he sits and doesn’t do anything, the more sore he will get.”
As for Tyler, “[Playing] sports was my whole life. I did everything (as a kid),” he said.
This year, he was one of the star football players, rushing for 1,002 yards and 12 touchdowns.
Last spring, Tyler went to state for track and field, participating in the 300 hurdles. He also participates in relays and jumping for track and field.
In the winter, Tyler lifts weights.
Although Tyler’s doctor was concerned he chose to be in a contact sport like football, “he shouldn’t quit his activities,” said mother Tammy.
“If it’s too painful, he shouldn’t push himself,” Tammy added. “But he’s such a competitor, he’ll work through the pain no, matter what.”
“It shouldn’t stop you from doing whatever you want to do,” Tyler added.
“It’s important that kids know, even if they are diagnosed with JRA, it shouldn’t stop them from being active and having fun,” Tammy said.
Something’s wrong, but what?
When Tyler began not feeling well, it took more than a month for doctors to figure out what was wrong with him.
Tyler was 14 years old, and was playing in the last eighth-grade basketball tournament of the 2007-08 season.
“I woke up sore and everything, but I still played,” Tyler said. “Every day from then on, I was sore and kept getting fevers.”
“It was not necessarily joint pain, but muscle soreness,” Tammy said. “He felt like he got run over by a truck, and it just got progressively worse.”
Tyler went to the doctor about his high fever one week, then was at the doctor’s office a couple times each week after that.
Doctors tested him for everything from Lyme Disease to infections.
Both Tyler and his mom were getting frustrated that the doctors couldn’t figure out what was wrong with him.
“I was frustrated to keep going back to the doctors, who were asking me the exact same questions and doing the exact same tests every time,” Tyler said.
He thought he would get better after a while and the illness would just go away, Tyler said.
“After going back for a month, and the doctors still couldn’t figure it out, I thought it was frightening,” Tammy said.
Eventually, Tyler was so sick he would not get out of bed and couldn’t walk up the stairs because he was in so much pain, Tammy said.
Tyler had lost 20 pounds, weighing only 103 pounds on a 5-foot, 3-inch frame.
It was decided to take Tyler to Children’s Hospital in Minneapolis. “We had a diagnosis overnight,” Tammy said.
The doctor who examined Tyler knew almost immediately by looking at him that Tyler had JRA because of a lacy rash all over his body, as well as his fevers.
Although Tammy was relieved they finally had a diagnosis, she also had to deal with the feelings of not wanting her son to have a crippling disease, she said.
Tyler was just relieved they finally knew what it was and could begin treating it, he said.
The doctor told Tammy that a trigger for JRA is a physically-stressed body.
In the last year, Tyler had grown at least 5 inches, and along with the intense basketball season, it is thought that’s what triggered Tyler’s first bout with JRA, Tammy said.
After beginning a regiment of Methotrexate, a powerful drug also used to fight cancer, and Naproxen, Tyler felt like his JRA was controlled, he said.
He regained his appetite and took protein supplements to regain his strength. By November 2008, he was feeling better.
Once he was strong enough, Tyler also started lifting weights
However, when Tyler joined track last spring, his symptoms began to return.
“Throughout the whole track season, it was there. I could feel it through my whole body,” Tyler said.
To control his pain during sports seasons, Tyler takes pain medication.
After track season, Tyler said he felt good again, but symptoms returned during football this fall.
“I always feel the pain is there, and I feel less athletic because of it,” Tyler said. “Some days are worse than others. But on game days and during track meets, I feel faster.”
Although he theorizes he feels faster because adrenaline is camouflaging the pain, Tyler also admits that he takes more medication to control the pain on game days.
By the end of each football game this past season, Tyler said his legs were exhausted from all the effort he put in.
Although Tyler doesn’t take pain medication when he is not having symptoms, he takes vitamins and herbal supplements Boswellia and Golden Seal to help control the symptoms of JRA.
Shocking diagnosis for a young child
Jackson was diagnosed with JRA at a much younger age than Tyler.
“I never noticed it (any pain or swelling), then mom noticed when I was sitting on her lap,” Jackson said.
At the time, Jackson was only 5 years old.
“His knee was as big as mine,” Sara said. “We thought maybe he had injured it while he was playing.”
Lori Chvojicek, Sara’s friend, who was a nurse, looked at Jackson’s knee, and told the Bakebergs they should get it looked at.
Jackson was brought to the Allina Medical Clinic in Cokato the following Monday, and the Bakebergs were immediately sent to Children’s Hospital in Minneapolis.
It was thought that Jackson had a strep infection in his knee, Sara said.
Fluid was pulled out of Jackson’s knee while he was sedated, but, “He was awake crying. It was awful,” Sara said.
The fluid pulled from his knee showed Jackson had JRA. “I was shocked. I had never heard of children getting this,” Sara said.
The Bakebergs think Jackson may have had JRA for a long time, but they never noticed, Sara said.
“It’s nice that he knows to tell us when something’s wrong, now that he’s old enough,” Scott said.
Doctors wanted Jackson to begin an 18-month regiment of Methotrexate.
Although Scott was on board, Sara wasn’t quite ready to give her child such a powerful drug without trying natural methods first.
So Sara and Jackson began “Jackson’s special diet,” and he began going to Cokato Chiropractic.
“I thought it was bad at first, but I didn’t mind it,” Jackson said about the bland diet with chalky soy milk that his brothers refused to participate in.
However, there just was not enough time for the natural methods to effectively treat the JRA before it began to affect tissue in his joints permanently, Sara said.
Jackson was also in a lot of pain, with JRA in both his big toes, a thumb, his left knee, ankle, and a wrist.
His knee was affected so badly, he couldn’t straighten his leg fully. “I remember him crawling to mom and dad’s room, crying,” Cal said.
The Bakebergs decided it was time for Jackson to take the Methotrexate, which is given by shot once a week.
Because Sara just couldn’t bear to do it, her friend, Chvojicek would come to give Jackson the shot.
“He hated it it was so bad. The needle didn’t hurt, but the medicine was painful,” Sara recalled.
Jackson was also taking one Aleve (Naproxen) daily while on Methotrexate.
One of the side effects Jackson developed from the mixture of drugs were white patches on his face, making it look like he had put stickers on his face while tanning, Sara commented.
Another scary side effect of Methotrexate is the potential to cause cancer, and the Bakebergs watch Jackson carefully for any marks they think may be cancerous, Sara said.
Jackson has had two spots removed so far, one from his foot and one from his lower back, which have been benign.
Over the years, Jackson has taken everything in stride. “What kid would be OK with all this?” Sara asked in amazement at her son’s ability not to let JRA affect his life.
The Bakebergs were hopeful Jackson had gone into remission after his Methotrexate regimen, which can happen with JRA. However, Jackson has had three “flare-ups” of JRA, going down to Children’s Hospital for each of them.
“When running in school, in [physical education], I can feel it when I step down,” Jackson said about his flare-ups, noting it felt like there was a bad bruise on his knee.
The flare-ups have always occurred in his knee, and as well as in his thumb once.
Although Jackson has been given a steroid shot directly into the joint for each flare-up, the doctors will not do that any more, Scott said.
“His joints are too small, and they are afraid the steroid shot will deteriorate his joints. I don’t know what they will do next time,” Scott said.
Jackson’s last flare-up occurred last spring when he was participating in the Showcase Hockey League.
He was given a steroid shot in the knee Friday, and was participating in a hockey game by early Saturday afternoon.
During baseball season, Jackson jokes with his friends about the steroid shots, saying, “A-Rod hooked me up.”
But there has also been concern about how they will affect his athletic career.
“Will I be able to play pro [sports] because I’ve used steroids?” he once asked Scott.
Scott assured Jackson that he would be able to, because the steroids were medically necessary.