Shortly after the New Year in 2014, I returned to my parent’s house to find my family missing, except my sister. She explained our youngest brother, Josh, was sick and went to the hospital. I asked if we should be worried and at the time she didn’t think so. The next morning we went to see him, he was yellow and losing strength...his liver was failing and no one could figure out why.
They moved him to the ICU, “as a precaution“ they said. But as the hours turned into days our baby brother was slipping worse and worse into liver failure. It seemed a transplant was his only hope. I filled out the paperwork and prepared to do what any big brother would to protect his family, if he needed a liver you better believe it was going to be mine.
Meanwhile, the hard working doctors had figured out why Josh was sick. He had Wilson’s disease, a genetic disorder that was preventing his body from excreting copper. Copper is found in most foods and is essential in a human diet but it was killing our brother. They immediately put him on medication to help flush the excess copper but a transplant seemed inevitable.
This story for Josh has a happy ending. He didn’t need a liver transplant. He was in 8th grade then and is now a fun loving freshman at Winona State. His life is irrevocably different, he takes medication multiple times a day, must pay close attention to his diet, and the cirrhosis on his liver may ultimately lead to that transplant, but thanks to the research that’s already been done he has been able to return to a relatively normal life.
Not every person suffering from Wilson’s disease is so lucky. The excess copper attacks not just the liver but the brain as well, causing an array of mental conditions including depression, sucidal and homicidal tendencies, and mood swings. One in 30,000 people suffer from WIlson’s disease but one in four children who’s parents both carry the genetic disorder unknowingly are born with this condition.
There is currently not a cure for Wilson’s disease, just treatment. While I was not asked to donate part of my liver, I’m running my first half marathon on behalf of my brother and all those suffering from this disorder in the hopes that donations like ours will one day help find that cure.