MILWAUKEE — Today is National Donor Day—a day dedicated to spreading awareness and education about organ, eye, and tissue donation.
Recently, TMJ4 received a message about a 2-year-old boy named Kole who has been battling end-stage liver disease.
Watch: This two-year-old boy is in need of a live-saving organ donation:
Sydney wrote asking if we could spread the word about his condition. She said, "He is truly the sweetest two-year-old, and as one of his teachers, it breaks my heart to see him like this."
Kole is in need of a donor to save his life, and his parents say they’ve been waiting by their phone—hoping for the call that will change their lives.
Little Kole is just like any 2-year-old—with a love for trucks, his sister, Bluey, and, just like any Wisconsinite—a love for Kwik Trip.
"Yes, he loves Kwik Trip," said Kole's mother, Ashley Voss.
The smile on his face is a reflection of his happiness and his resilience during an incredibly difficult time.
Kole's parents, Kyle Duernberger and Ashley, said that since birth, Kole has faced a number of health complications—but it was at two months old when doctors noticed a change in his skin color.
"They noticed that he was a little bit yellow, so they sent us to get labs done," said Ashley.
Kole was diagnosed with biliary atresia—a rare disease of the liver and bile ducts.
At a young age—and with chronic liver disease—Kole has had to endure many doctor visits, surgeries, and discomfort in his belly.
"His liver is so big, it’s not really leaving a lot of room for the other organs in his body," said Kyle.
Just a month ago, an infection landed Kole back at Children's Hospital—where things took a difficult turn.
"Everything that could go wrong did go wrong, and it all started with an infection," said Kyle.
Complications from that infection resulted in Kole's parents being told their son was now facing end-stage liver disease.
"Right now, he recently has no blood flow in his portal vein, so he has a blood clot. That’s what we’re working on—he is actively listed on the transplant list," said Ashley.
Kole is now one of more than 2,100 children on the national transplant list.
"There is nothing in this world that can help other than getting a liver transplant. It’s not really an option for a live donor—he needs a full liver. The hardest part for me is waiting and watching him suffer," said Kyle.
For the family, all they can do now is wait—which they say is the hardest part.
"Right now, we are helpless until that happens. There’s nothing anyone can do for him until he gets a healthy organ," said Kyle.
But the staff at Children's Hospital and support from the community have brought them strength.
"Children's is amazing," said Ashley.
And now, they are sitting by their phone, anxiously waiting for the call that will change their lives. Until that day, they hope to bring awareness to the impact organ donation can have.
"His chance to live is based on a donor. That's the biggest message that I have. Obviously, it's everyone’s decision whether they want to be a donor or not, but the choice to be a donor saves many lives—not just one."
To help Kole and his family with medical expenses, click here.
To learn more about organ donation, click here.
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