Hilts Family Album

Being a professional photographer it can be fun capturing one's children growing up.  It was no different for us.  Anton and Jesper were always up to something, and as you can see from this photo gallery, it often had to do with ski racing. Click on any image to view or click here to view Jesper's Story and how we arrived in Bend, Oregon. 

   A Youngster's Show of Heart    By Rebecca Merritt  The Bulletin, Bend Oregon  March 23, 2003

Eight-year-old Jesper Hilts was not supposed to ski again, his doctors told his family three years ago.  The doctors had discovered Jesper has no left pulmonary artery to carry blood from the heart to the lungs, causing a dangerous amount of pressure on his right lung. He was diagnosed with pulmonary hypertension, a rare and serious heart and lung disease.

But several weeks after he was discharged from The Children's Hospital in Denver, Colo., in the winter of 2000, Jesper strapped an oxygen tank to his back and hit the slopes at his old hometown, the Colorado ski resort of Aspen. "He wanted to ski one more time," said his father, Bryan Hilts of Bend.  Jesper refused to stop there.

Now 11 years old and a sixth-grader at Bend's Cascade Middle School, Jesper spends most of his weekends racing down Mount Bachelor or other Northwest ski resorts as part of the Mount Bachelor Ski Education Foundation team.

Last year, he was named "Ski Meister" at a race at Mount Hood for his overall ski performance.  Next year, he hopes to make it to the Junior Olympics.  He dreams of making it to the Olympics someday with his brother, Anton, also a ski racer.

Jesper hardly gives much thought to his health condition even though it has landed him in the hospital several times this winter. "I'm a normal kid," Jesper insisted, hanging out at his dad's house last Wednesday.  "I never think about it," he said. "It doesn't bother me."

But Jesper is far from the usual kid, said Dr. Urszula Tajchman, a Bend pediatric cardiologist.  "It's totally rare," Tajchman said. "It's rare to have his condition and it's rare for someone with his condition to be out there skiing and doing it so well."  Tajchman said many children with this disease struggle with minor exercises. "To me, it's inspiring just to be around him," she added.

Regular medical care from Tajchman and consultations with his cardiologist in Denver who specializes in pediatric hypertension — along with a move from Aspen to a lower elevation — allow Jesper to stay active. Skiing is his life, Jesper said, and he can't imagine sitting at home on weekends.

"He was pretty stubborn about the whole thing," said his mother, Anna-Lena Hilts, also of Bend. "The first day we came back home from the hospital he was figuring out how to climb a tree with his oxygen tank.

Pulmonary hypertension is a rare disease that results in the progressive narrowing of blood vessels in the lungs, according to the American Lung Association. The disease causes high blood pressure in these vessels that could lead to heart failure.  About two in every one million people have primary pulmonary hypertension, meaning the cause is unknown, according to the Pulmonary Hypertension Association.

In Jesper's case, the missing pulmonary artery is the cause of the hypertension, which makes his case rare. In the past, the survival rate of people with pulmonary hypertension has been low.

But advances in medicine have brought new hope, said Tajchman, the pediatric cardiologist. Jesper takes medicine that dilates the vessels in his right lung to keep his heart stable. He also uses supplemental oxygen that also helps keep his disease in check.

He has echocardiograms every three months to check the condition of his heart and he has monthly blood draws.  Tajchman said Jesper's heart is stable and as long as it stays that way he should be able to keep up with his active lifestyle.  "There's always a risk," she said of Jesper's skiing. "His family made the decision that they want him to have the best quality of life possible. I totally support that."

Jesper was apparently born with the disease, but had no symptoms until he was 8 years old.  The youngster said he was on a ski trip to Winter Park in Colorado. He didn't feel well. He couldn't sleep and he couldn't walk. His lips and fingernails turned blue, he said.

Later medical tests showed he had experienced a high altitude pulmonary edema, his father said.  The condition, which causes an accumulation of fluid in the lungs, is usually experienced by mountain climbers or others who make a major altitude change.  But for Jesper, who was born at 8,000 feet in Aspen and had spent all his life at high elevations, it didn't make sense.

He received oxygen at a local clinic and then was taken to The Children's Hospital in Denver for two weeks of tests and treatments. By the end of the stay, the doctors told his family they needed to move the boy from the high elevation and there would be no more skiing.

Jesper's father, Bryan Hilts, and his mother, Anna-Lena Hilts, are divorced. Both are committed to dropping their lives in Aspen to move to a lower elevation for Jesper.  In Aspen, Jesper's father worked as a film producer for a PBS show "Wild America," while his current wife, Mary Louise, worked as a ski instructor. Anna-Lena, Jesper's mother, worked as a store manager.  The two families worked together to find a region low enough for Jesper but with ski opportunities for his brother, Anton, who was succeeding at ski racing. They were prepared to move out of the country, Bryan Hilts said. But friends kept recommending Bend.

They chose Bend not only because of Mount Bachelor, but also because of the medical care available here, he said. And thinking that Jesper was done skiing, the community offered plenty of other activities for his son.

Jesper's father started a photography business here, while his wife continued ski instructing at Mount Bachelor. Anna-Lena developed a new career as a massage therapist and also works as an appraiser's assistant.

Jesper's progress since the families moved to Bend has exceeded their expectations, his parents said.  "He's living a really normal life now," Anna-Lena said. "Our goal has always been that he needs to be a kid first of all." They never expected him to be an avid ski racer.  "He was stubborn enough about it that he was going to keep skiing." Bryan said.

If he couldn't ski, Jesper said, "I'd probably be cranky all the time."

And it turns out the skiing is the one sport that he can do, his father said. Jesper had to give up some sports such as football and soccer because they require a much more extended amount of aerobic activity than skiing a race course.

"Skiing was the one thing he wasn't supposed to do," Bryan said. "It has become the one thing he can do."

His mother added they have tried to focus on the positive for Jesper to keep from dwelling on the negative of the disease.  "If we told him not to go skiing, that would pretty much cut his spirit in half," Anna-Lena said. "All we can do is to encourage him."

Still, Jesper's disease caused some scary moments for his parents this winter. Earlier this winter, he was flown by Air Life to Doernbecher Children's Hospital in Portland because he coughed up blood. He has had several stays at St. Charles with complications from colds. But despite the setbacks, he keeps skiing.  "He's gone from intensive care to racing in the same week," Bryan said. During those setbacks, his doctors will suggest he rest awhile, but Jesper is determined to ski.  "We do tell him to lay low but he usually doesn't listen," Tajchman said.  With a matter-of-fact voice, Jesper described the routine after his hospital stays.  "You go home, you rest for one day and then you go skiing," he said.

Jesper hopes skiing can always be a part of his life, but he's making plans if his Olympic dream doesn't pan out.  "If I don't ski, I want to be a person that builds things," he said.

Cloud 9 Photos 2042  NW Eastes St. Bend, Oregon
Tel: 541.771.3200       Email: cloudnine@bendcable.com

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