Banning organ transplant discrimination one step closer to becoming law

NOW: Banning organ transplant discrimination one step closer to becoming law

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MADISON, Wis. (CBS 58) -- Imagine being told by your doctor your child doesn't qualify for an organ transplant because of their disability.

That's the somber reality for individuals in Wisconsin and across the U.S, but lawmakers are one step closer to changing that.

Malix Kulczewski is an energetic, fun-loving boy who will soon celebrate his fifth birthday. Shortly after Malix was born, he was diagnosed with a heart defect, which is common for babies born with Down syndrome.

Tom and Michelle Kulczewski, Malix's parents, were devastated by the news, but just as any parent would, they asked their doctor what their options were.

"We had two options to choose from -- do you do a surgery where your son is going to die in 10 years, or do the risky surgery that your son can live," Kulczewski said.

The day before Malix's open heart surgery, Kulczewski asked the surgical team about a third option, why not an organ transplant?

"They simply said that wasn't an option because he has Down syndrome."

It was difficult for Tom and Michelle to wrap their heads around why their child was deemed ineligible for an organ transplant due to his disability. Turns out, they're not alone.

Denying organ transplants to people with disabilities like Down syndrome is common across the U.S. despite it being illegal under federal law, the Americans with Disabilities Act.

A study from 2008 shows 44-percent of organ transplant centers would not add someone with a neurodevelopmental disability to the organ transplant list.

Some physicians worry the procedure could be dangerous or it's unlikely to improve their patient's life, according to a report from the National Council on Disability. 

Despite those daunting outcomes, the Kulczewskis are fighting for others to at least have the option to choose from.

"To sit at that table and hear that our son did not quality and is not worthy enough is just heart-wrenching, and we want to change that," Kulczewski said.

The Kulczewskis contacted State Rep. Mark Born (R-Beaver Dam) in hopes to change outcomes for future generations, and months later, a bill was drafted.

The bipartisan anti-discrimination bill is now one step closer to becoming law. It prohibits organ transplant discrimination against people with disabilities.

The Assembly and Senate passed the bill unanimously. It now heads to Governor Tony Evers' desk for consideration.

"We don't want any family to feel like their child is less of a person in a critical moment like that," said Kulczewski. "We are thankful we asked our doctor for this as an option and we're here to change that for other families."

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