For nearly six weeks, Jared Stene's family members had awaited news on the malady that propelled their son into massive organ failure and killed him last November.

Last week, the Woodbury family learned that Stene had a rare genetic disorder called Wilson's disease that went undetected and allowed copper to accumulate to toxic levels in his liver.

The explanation for her brother's death at age 22 brought both relief and apprehension for his sister, Caitlin Stene, 20, who now will be tested for the disease. The Winona State University student could also pass the disease to her future children if she's a carrier.

Still, "it's comforting knowing we couldn't have done anything differently" to save Jared, she said.

Jared Stene, who served as student senate president at Winona State University, was energetic and young, and had always appeared healthy. For most of his life, there had been no signs of the disease that killed him.

Wilson's disease is treatable if caught early enough, said Dr. Timothy Whelan, who worked with Stene at the University of Minnesota Medical Center, Fairview.

By the time Stene became severely ill, the only thing that would have saved him would have been a liver transplant, Whelan said. But he was too weak to survive the surgery.

The disease is generally screened for only in people with a family history of it, said Amy Gaviglio, a genetic counselor at the Minnesota Department of Health Newborn Screening Program. Stene had no family history, Whelan said.

Symptoms can be hard to detect, he said, and "people can put up with an awful lot of stuff before they come to the doctor."

Stene first noticed something unusual just before last Thanksgiving, when he complained about feeling itchy and thought it could be allergies, she said. He saw his family doctor, who found liver toxins in his blood but couldn't figure out what was wrong, she said.

Stene went back to school, but stayed in his apartment. He turned yellow from jaundice, grew exhausted and tolerated chest pains, his sister said. "He didn't want to tell anyone he was sick," she said.

After he almost fainted, his roommates called an ambulance, and he finally ended up at the university medical center on Nov. 28. By then, he was barely strong enough to breathe on his own.

In his last hours, Caitlin Stene said, her brother was able to respond to her by squeezing her hand and looking in her direction when she talked to him.

After he suffered a heart attack, hospital staff took the dialysis machine out of the room, allowing Caitlin and her parents to gather around his bed, she said.

"We said our last words and prayed and sang to him, and then all three of us looked up at the same time and told the nurse we were ready to let him go," she said. "At the exact same time we said we were ready, it was like he agreed with us, and he just slipped away."

About one in 30,000 people has Wilson's disease, according to the National Institutes of Health.

Wilson's disease shows up in people with a genetic mutation that affects the protein responsible for flushing excess copper out of the body, according to the Mayo Clinic. Instead of leaving the body, copper stores up in the liver and sometimes other vital organs, which can cause fatal damage.

The disease isn't currently among the conditions screened for in Minnesota infants, Gaviglio said, partly because it's difficult to detect copper buildup in babies. But researchers are working on it.

People whose Wilson's disease is diagnosed early can survive by adjusting their diet and continually taking medication to flush out copper, according to the Mayo Clinic.

Courtney Blanchard • 612-673-4921