Son's diagnosis prompts Batavia family to raise awareness about juvenile osteoporosis
For many parents, watching a child play sports from the sidelines or the bleachers is the norm. Parents are there to cheer in victory, console in defeat.
Can you imagine watching your son play one of his favorite sports, and suddenly he complains of intense pain? No one has touched him; he hasn't seemed to twist an ankle, and yet he has terrible pain.
"Jake was playing in a basketball game and complained of pain," said Bob Mangers, Jake's dad. "He came out of the game and sat on the bench. I thought he had pulled a muscle."
When the pain didn't go way, the Mangers, of Batavia, took him to a doctor who ordered an MRI. It showed a fracture in his hip, and he had to be on crutches for several months. He hadn't fallen. He hadn't been fouled in the game. He was running down the court, and he experienced pain.
He was only 11.
"He had several more breaks over the next couple of years without any known trauma," said Jake's mom, Erica. "He had to give up all his favorite activities. He always had participated in and loved sports, and not only was he unable to play sports or even run around with his friends for over two years, he was also at risk of a break simply from walking to school."
During this time, Jake constantly had pain. It was a very difficult time physically and emotionally, for him and his family.
He was referred eventually, for treatment at Lurie Children's Hospital in Chicago. Jake had to undergo a great deal of testing to rule out other diseases and disorders that often have the side effect of bone fracture. Eventually, the doctors came upon the diagnosis of idiopathic juvenile osteoporosis, a rare form of osteoporosis that causes the bones to demineralize or to turn over too quickly so that they are prone to breakage without trauma.
"I think the hardest thing was not knowing what was causing the fractures," Bob said. "Could it be bone cancer? But throughout all of it, Jake stayed so positive. And we tried to as well."
The doctors at Lurie recommended treating Jake through physical therapy and medications.
"Then we had another setback when Jake experienced a fracture during physical therapy," Erica said.
Jake never gave up. His bones grew stronger, and his muscle mass increased.
"In the beginning, it was really scary," said Jake, "especially when one doctor said I might not walk again.
Throughout his ordeal, Jake felt support from his friends and his coaches. He remained on his baseball team even when it meant his involvement was cheering on his teammates from the bench or an occasional at-bat. Batavia High School baseball coach, Coach "Krolo" (Brian Krolikowski), recommended that Jake work with a trainer, Mike Miller, at Ethos 360 in North Aurora.
One of the new exercises required Jake to jump off a box. That was frightening for Erica to watch.
"I had a lot of texts from her while that was happening," added Bob.
All the hard work paid off. Today, Jake is an active junior in high school and able to play his favorite sport, baseball.
The Mangers wanted to share Jake's story because idiopathic juvenile osteoporosis is so hard to diagnose. It is often considered an invisible disease. "If we can help another family who has a child dealing with similar symptoms, we want to do it," said Bob.