The cause of former Winona State University Student Senate president Jared Stene’s death was shrouded with confusion and mystery, especially for the Stene family.
About two weeks ago, the doctors informed them Stene had a rare, genetic disorder called Wilson’s disease.
According to Stene’s sister, Caitlin, a Winona State sophomore,
he was the first case of Wilson’s disease in their family and the disease was passed on from her parents, who each carried the chromosome.
“Both of my parents were carriers, so there’s never been anyone in our history with it because it’s so rare,” said Caitlin.
“It’s a recessive gene, so they both had to carry it for it to happen.”
Wilson’s disease is characterized by copper build up in the heart or liver, according to the Wilson’s Disease Association International. According to the WDAI website, patients with Wilson’s cannot excrete the excess
copper the way most people do and the copper build up results in poisoning which can cause organ failure.
The WDAI said the disease affects about one in 30,000 individuals
and is fatal if it goes undetected or untreated.
“Nobody checks or screens for it unless somebody in your family has died from the disease, so it’s almost like a catch 22,” said Stene’s father, Bruce.
According to Bruce, the disease becomes a “numbers game” because it’s so rare.
“The doctor said this is the first case of Wilson’s he’d ever seen and for as long as he practices medicine he will probably never see another case of it,” Bruce said.
The WDAI website said testing for Wilson’s is relatively simple and can diagnose patient’s with Wilson’s whether they are symptomatic or not.
Stene’s condition had progressed too far, and even if the doctors caught it the first time he went in the hospital was nothing they could have done there, Caitlin said.
The doctors were concerned that it was Wilson’s initially, but it couldn’t be tested due to his thin blood and weakness, Bruce said.
“There was nothing they could do for him because the procedure itself would have killed him,” he added.
Even after Stene’s death, the doctors were not sure what the cause was. Bruce said it was frustrating for the family to have questions without answers.
He said getting those answers provided some form of comfort.
“As a family, you play the ‘what if?’ game; ‘what if we would have done this?’ and ‘what if we would have known that?’ and it closes those questions for us now that we know we did everything possible and the doctors did everything possible,” Bruce said. “In a way, that’s a very comforting feeling.”
Caitlin emphasized that everyone needs to know about the disease, especially because it’s so rare that doctors never test for it.
“I’m going through the process now of getting tested,” Caitlin said.
“I’m working with the University of Minnesota’s genetic counseling. From what I know it’s just getting blood drawn and looking at genetic makeup.”
She said it is an extremely livable disease, especially if caught at a young age.
In addition, it is completely manageable with diet and medication.
“One of the frustrating things for us is knowing that it’s completely
treatable once you know you have it,” said Bruce.
According to Bruce, the family received a lot of support
through the whole process from the hospitalization to the funeral.
“It’s been overwhelming for us with all the people that have come forward to wish us the best and give us their remembrances,
and it’s a very humbling moment,” Bruce said. “And we just thought he was a kid who needed a haircut.”
Contact Courtney at CLZinter8738@winona.edu