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Pitching in to help: Lee Petersen of Hastings has a rare condition that causes his vertebrae to fuse together

Lee Petersen and his wife, Peggy Evans, are pictured here. Petersen has ankylosing spondylitis, a long term form of arthritis. Submitted photo

The past 10 years haven’t exactly been what Hastings residents Lee Petersen and his wife, Peggy Evans, expected. Since they married in 2003, the couple has been bound by hospital visits, medical problems and Petersen’s ever decreasing mobility.

Ever since Evans knew him, she said, Petersen has had issues with his neck. It always looked stiff, she said. At first, doctors attributed it to frozen muscles due to some damage. That was just the first misdiagnosis.

In 2005, Petersen fell while at work, and the problem got worse. His doctors at first thought it was the fall that aggravated the issue, but one Hastings doctor started digging deeper. That same year, Petersen was diagnosed with DISH, a form of degenerative arthritis or osteoarthritis. But further tests showed something different; instead of degenerative behavior, doctors saw regrowth in Petersen’s spine. A blood test showed he had a genetic marker for ankylosing spondylitis (AS), a type of long-term arthritis that can cause spinal vertebrae to fuse together. He was diagnosed with AS in 2006.

AS isn’t very common to begin with – WebMD reports that it affects only about .1 to .5 percent of the adult population – and Petersen’s case is rare among even those.

“From all the people we have talked to, he is the youngest and most severe case they’ve ever seen,” Evans said.

Since his diagnosis, Petersen’s spine has completely fused, she said, as well as his left shoulder. He has bone spurs on his other shoulder, his hips, knees and ankles, and doctors now worry they’re developing on his rib cage and fingers.

In 2010, he suffered another setback. He developed cellulitis in one leg that required a week in the hospital to control and months of recovery at home. Once the wounds from that healed, he was diagnosed with lymphedema, a blockage in the lymphatic system that leads to swelling. This year, he was diagnosed with cellulitis in his other leg as well.

The fused bones have severely limited Petersen’s mobility. He’s unable to work now, and can’t even look up at the sky, Evans said. He’s unable to drive now as well and has trouble walking. And all of it comes with constant pain.

“Living without pain is not an option anymore,” Evans said.

Evans has become her husband’s primary caretaker. Their health insurance will only pay to have a nurse help in their home some of the time, so Evans has learned how to change Petersen’s leg wraps and bandages, how to safely help him get into and out of vehicles and how to handle whatever other medical issues arise.

“It just needed to be done, so I just stepped up,” she said.

Every month, Petersen goes to regular Remicade treatments, a process much like what is done in chemotherapy. The infusions help; within 24 hours Petersen’s inflammation starts to diminish, he gets better range of motion, can stand up straighter and has less pain. But it’s not a cure, and so far, there is no cure available.

Meanwhile, Evans is working two jobs to make ends meet. Petersen gets some money from the government through disability, but there was a period of about three years where he had no income at all. Evans worked three to four jobs then, she said.

Everything about living with the condition has been challenging, Evans said.

“Everything from just daily life to goals and dreams and how people perceive friendship,” Evans said.

There are social stresses – they don’t get invited as much to events, and it’s difficult to face the people who stare because of how the condition has affected Petersen’s appearance. It’s even difficult to keep up with family.

“He has two nephews he absolutely adores,” Evans said.

Since he can’t actively participate in their lives as much, she often attends their extracurricular activities and takes photos and video to bring home to her husband. He also keeps involved in their lives by watching the Hastings television channel.

There are challenges in planning, also. They have to keep track of every little thing, making sure he doesn’t get more infections, getting him to medical appointments, finding new solutions to unexpected problems and more.

As difficult as it all is, the couple has adjusted.

“It’s just us,” Evans said. “It’s our status quo. It’s just our norm.”

Help from friends

Although Petersen and Evans have had to adjust to a new normal, they’re not alone.

Jan Volimas has worked alongside Evans at a Lakeville business for the past year and a half. Naturally, she’s learned of Evans’ situation and the struggles she faces on a daily basis.

“What brought it to a head was when they were needing a ride to go to an appointment,” Volimas said.

Evans’ vehicle could no longer accommodate Petersen’s needs, so they have to borrow a vehicle to get him around, whether to medical appointments or just to get out to enjoy the riverfront.

“He’s severely homebound,” Evans said.

And, if there’s a minor emergency, they currently have no guarantee that they’ll be able to get access to a vehicle in a timely manner.

Volimas turned to GoFundMe, the online fundraising site. There, she set up a donation page for Petersen and started spreading the word. The goal, she said, is to raise enough money to purchase the couple a new vehicle that can accommodate their needs.

To donate, go to www.gofundme.com/leepetersen. Another coworker set up a CaringBridge site, www.caringbridge.org/visit/leepetersen.

Evans admitted it feels weird that her coworkers would step up in such a big way to help her and her husband. She always figured they didn’t need help, and that they would simply figure it out on their own.

“I lucked out,” she said.

Beyond the two websites, Evans’ coworkers are setting up a “sweet treat” bake sale fundraiser and a silent auction. Her company will hold a raffle drawing at its Christmas party, and the Lakeville Lions have stepped up with a $1,500 grant, Volimas said. Another coworker was able to get a donation from Apple Valley Ford, as well.

Repaying kindness with kindness

All the difficulty they’ve face still hasn’t made Petersen and Evans focus their attention inward. This holiday season, they’ve decided to forego exchanging gifts between themselves and instead are donating to Toys for Tots.

“With everything this year and all the help we’re getting, we wanted to be sure we could still help others,” Evans said.

Petersen suggested Toys for Tots, and now the couple is working on finding toys to give to children. Petersen is a big Star Wars fan, Evans said, so he picked out a few Star Wars toys to give away.

“Christmas is about children,” Evans said, “and we don’t have children. We just wanted to make sure other children have a big Christmas.”

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