ST. JOHN — Camden Schuster's jaw has been disappearing.
The Lake Central High School freshman's mouth bones have dissolved to the point he is having trouble breathing and has had to stop playing sports.
The 14-year-old has a form of juvenile arthritis that has progressed to where he needs a prosthetic jaw.
The specialist for this type of surgery, however, is located in Dallas. And the procedure is going to cost the family tens of thousands of dollars.
"Nobody should have to go through this," said Havens, 33, a Winfield property manager. "Camden obviously has a long life to live."
Camden has been treated for arthritis since he was a little boy. His doctors told his family he eventually would need surgery, but not until he was an adult.
Then, recently, he started having migraines and getting winded easily. His parents thought it might be anxiety.
In December, however, his oral surgeon said Camden's jaw had gotten so bad that the procedure couldn't wait. His juvenile idiopathic arthritis had caused a condition called idiopathic condylar resorption, where the jaw dissipates. The ailment is said to affect less than 1% of the population, mostly teen girls. The cause is unknown, according to experts, but may be related to genetics or triggered by a virus or bacteria.
Camden had to quit football, soccer and wrestling. He runs out breath just walking up the stairs.
"If I chew, I can't chew that long," Camden said. So he eats slower and takes smaller bites.
The family was referred to a jaw surgeon in Dallas, Dr. Larry Wolford, who helped develop the procedure to treat this condition.
But the family needed to put $12,000 down in order to even schedule the surgery because insurers don't cover the surgical fees. One month before, the Schusters will owe $55,000.
"Why are you doing this yourself?" Havens said she asked Camden's mom, Heather Schuster, a 37-year-old stay-at-home mom and babysitter.
"They work so hard. They have five kids, and they're all active. I asked if it was OK if I did this for her. No one's comfortable asking for money. What's the worst thing that can happen?" Havens said.
Thousands of dollars started pouring it almost immediately.
"It's truly amazing how many people love this family," Havens said.
"It took off like wildfire," said Mike Schuster, 37, who works in recruiting and marketing.
The family has now scheduled the surgery for May 2020.
"It's weird. I don't really know how to feel about it," Camden said of the response.
"It's emotional," Heather said.
"It's weird to have people give you money who you don't know or haven't seen in 15 years," Mike said.
Wolford, the Dallas oral surgeon, said the procedure will restore Camden's ability to breathe and chew normally, and get rid of the headaches and other pain he's been experiencing.
The surgery will include implanting prosthetic jaw joints and moving the lower jaw forward to its normal position, as well as repositioning the upper jaw and clearing the nasal passages.
Wolford said the prosthetics are long-lasting; in 30 years of implanting them he hasn't had to replace one yet due to wear and tear. Before the prosthetics were developed, surgeons would have to use bone grafts from the patients' ribs or collarbones.
"The jaw is sort of like a ball-and-socket joint," Wolford explained. "What happens with this disease is the ball parts of the socket dissolve away, so when then the lower jaw slowly becomes more protruded. Camden has fairly significant underdevelopment of his lower jaw. It's over an inch back from where it should be."
His bite got altered, making it more difficult to chew food. His throat became compressed, narrowing his airway by about 75%
"I don't think he knows what it's like feel normal," Heather Schuster said of Camden. "I don't know if if knows what it's like to not be in constant pain. This will be huge once it's all said and done."
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