MENDON, Ill. -- Waylun Klauser is a normal kid most days, unless he is having an episode.
Waylun started having bouts of overwhelming pain for no apparent reason when he was 2 1/2. His family came to recognize these "episodes," and now, at 9 years old, he has had 18.
"At 2, all he could say was, 'My belly hurts," said Waylun's mother, Nikki Klauser. "We really didn't know what it was."
Almost four years and countless labs and tests later, Waylun was diagnosed with hereditary pancreatitis.
In the three years since, the frequency and severity of Waylun's episodes have shot up. While he used to recover from these five-to-seven-day stints at home, Waylun now is hospitalized with almost every episode. Lately, they have been coming about every 60 days -- a stark contrast to the two or three he had each year when he was younger -- and their frequency is increasing.
He had episodes last September, November, January, February, March and April.
"That's the crazy thing," said his father, Josh Klauser. "He could be outside playing all night, come in and go to bed, wake up the next morning, and it's there. You just never know."
Waylun didn't eat or drink anything for almost a week when he had an episode last February.
"It was brutal," he said. The family feared he might have to have a feeding tube put in, but he "got lucky," Nikki said.
People with chronic pancreatitis such as Waylun's, Nikki said, generally look normal and healthy, but when the pain hits, it's intolerable. The condition is rare -- about 1,000 people in the United States suffer from it -- awareness is staggeringly low.
"(People) don't have any idea how to treat it or even what it is," Josh said. "When we go to the hospital, they basically ask us, 'What do we need to do for you?'"
When Waylun has an episode, his older brother, Wyatt, 12, is usually rushed off to stay with his grandparents. The separation can be difficult on the brothers who play together all the time.
"When Wyatt comes to visit me in the hospital," Waylun said, "it's like I'm in heaven."
The similarities between Waylun and Wyatt are striking. Sporting the same haircut, the biggest visible difference is the 21/2 years between them. But Waylun will soon be spending his days at the University of Chicago Hospital, recovering from the removal of his pancreas and transplantation of islets of Langerhans cells into his liver.
"Sometimes in the middle of school I want to start crying, but I just tell myself he's OK," Wyatt said of his younger brother's condition. "Nothing bad's going to happen. I've built up the confidence that he's going to make it home."
Josh and Nikki do their best to hold the family together, but the toll each episode takes is noticeable. Josh takes it "one episode at a time, one day at a time."
"There are times that, as a mom, I just want to break down, but I know I can't in front of him," Nikki said, stifling tears and stealing a glance toward Waylun to make sure he didn't notice. "It takes a lot of prayer."
The Klausers know they no longer have a choice. Josh and Nikki have kept Waylun informed every step of the way and have left the decision up to him.
"Without the surgery," Nikki said, "he's going to be brittle diabetic by the time he's 30."
Waylun will have to stay in Chicago for at least two weeks to be monitored for infection after the surgery. Family members have organized a benefit to help pay the family's bills while they spend close to a month off work in order to be at the hospital. The money raised will help cover Waylun's medical expenses, travel expenses and the family's day-to-day bills.
"It's not anything we would have ever done for ourselves, and I feel really weird about it," Josh said, "but it's great and will be extremely appreciated. We have a great support system in our family and in the community."
The benefit will be from noon to close Saturday, May 27, at North Side Boat Club in Quincy. For more information or to make a donation call John Baze, 217-430-1016, or Trudy Baze, 217-242-9656.