Jon Anglemyer

Jon and Melissa Anglemyer and their two children, Bruce, now 4, and Holly Dawn, now 2.

It was a Valentine's Day present like no other. On Feb. 14, 1999, Jon Anglemyer received the call from Mayo Clinic telling him the wait was over — a donated kidney and liver were available.

That call — and the successful kidney-liver transplant that occurred two days later — were the turning point in Jon's search for a cure for hyperoxaluria, a rare, genetic kidney disease.

With hyperoxaluria, too much of a substance called oxalate is present in the urine. It's a natural byproduct of metabolism. But too much causes kidney stones, which Jon had experienced as a teen and young adult. Because Jon was otherwise healthy, no one suspected the kidney stones were caused by an underlying, life-threatening illness that was destroying his kidneys.

Quietly, the illness had taken its toll. In 1996, in his senior year studying biology at East Carolina University in Greenville, N.C., Jon had a dream internship. He was training dolphins at Walt Disney World in Orlando, Fla.

"I came up from a dive and had a bad taste in my mouth with flulike symptoms," says Jon. Because he didn't want his illness to interfere with an upcoming trip to the Florida Keys, he went to urgent care.

The next day, a call from the care provider was jolting. Blood work showed his symptoms weren't caused by the flu. "They said, 'Go to the hospital. Your kidneys are gone,'" says Jon.

He returned to Greenville to finish his degree and attend to his health. Three times a week he went to a hospital after class to receive kidney dialysis.

Jon graduated and began work on his master's degree, but his symptoms grew increasingly troublesome. "I was very weak in my hands and feet," he says. His doctors recommended a kidney transplant. A dialysis nurse, who had become a friend of Jon's, donated her kidney for the transplant in March 1997.

But a new kidney wasn't the whole solution. "I went from bad to worse," says Jon. "I was bedridden. I lost all strength and was living in a rehab facility."

Baffled, Jon's doctors kept digging for the reason behind his second kidney failure and continued poor health. "They put two and two together," he says, finally pinpointing hyperoxaluria as a possible cause, even though his family had no history of the genetic illness. His doctors recommended that he go to Mayo Clinic.

The Mayo Clinic Hyperoxaluria Center in Rochester, Minn., is one of the most experienced centers in the world for hyperoxaluria, treating and following more than 50 patients a year. Few medical centers offer this specialty because the illness is so rare.

"The likelihood of any individual having this disease is about one or two out of a million," says Dawn Milliner, M.D., a nephrologist and director of Mayo Clinic's Hyperoxaluria Center, which is funded by the Oxalosis and Hyperoxaluria Foundation (OHF).

In October 1997, Dr. Milliner confirmed Jon's diagnosis of hyperoxaluria. Dr. Milliner and her team recommended a kidney and liver transplant. In primary hyperoxaluria, the liver produces far too much oxalate. The kidneys eliminate the excess oxalate, but they are damaged in the process.

"That's why a new kidney alone does not solve the problem," says Dr. Milliner. "A new liver that makes normal amounts of oxalate also is needed."

While Jon waited for donated organs, he coached a swim team in Rocky Mount, N.C. By December 1998, he was at the top of the transplant list and had moved to Rochester. He waited again for the call that came on Valentine's Day.

Once again, Jon waited. By December 1998, he was at the top of the transplant list. He moved to Rochester, where he taught swimming lessons to pass the time until the Valentine's Day call.

The kidney-liver transplant cured his illness. On Valentine's Day 2009, Jon marked the 10th anniversary of the transplant.

"It's all turned out how I hoped," says Jon, who works as a liaison between fish dealers and fishermen for the North Carolina Division of Marine Fisheries. "My quality of life is excellent."

Jon and Melissa encouraged their friends and family members to donate to the Oxalosis and Hyperoxaluria Foundation in lieu of wedding gifts.

Jon and his wife, Melissa, were married in 2003. Grateful for Jon's good health, the couple encouraged their friends and family members to give donations to the Oxalosis and Hyperoxaluria Foundation in lieu of wedding gifts.

The family, which now includes Bruce, 4, and Holly Dawn, 2, four horses and three dogs, lives on acreage outside Grimesland, N.C. Holly's middle name was selected in part to honor Dr. Dawn Milliner. "I can't say enough about the care I received and how wonderful Dr. Milliner is," says Jon, who continues to see Dr. Milliner for annual checkups. "She's the best."