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Families fight to change law that excludes people with Down syndrome from organ donor list – WCCO

MINNEAPOLIS (WCCO) – Parents in Minnesota and Wisconsin are calling for equal treatment for their children. Currently, people with certain disabilities like Down syndrome may be refused an organ transplant due to outdated laws.

WCCO explains how families are fighting with lawmakers to make transplant discrimination a thing of the past.

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Barely 10 weeks after the start of her pregnancy, Geri Cuskey learned that their third child would be born with Down syndrome.

“A lot of people would say I’m sorry, but looking back I mean why you’re sorry,” Cuskey said.

Morgan just got one. Her mother and aunt are just part of the small army in western Wisconsin who are fighting to better protect her in the future if Morgan needed an organ transplant.

“You say that just because she was born with an extra chromosome, she could possibly be refused. Who even has the heart to say that, ”Cuskey said.

Morgan’s godparents have found that in Wisconsin, when it comes to transplants, people with neurological conditions can face discrimination.

“It’s a matter of life,” said Jayne Jones, Morgan’s godmother. “People with an intellectual disability or an IQ below 70 have a hard time getting on the list for transplants.”

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Jones has learned that the majority of transplant centers consider a disability as a reason to say no.

Some doctors are concerned that patients will comply with post-transplant requirements, exposing them to liability.

In Minnesota, Johnny’s Law may soon prevent this from happening here. This bill is expected to pass through the Legislature this year.

They want Morgan’s Movement to do the same in Wisconsin.

“Her life is precious,” Jones said.

“We just knew we had to do something about it,” Morgan’s mom said.

There is a federal law that Morgan’s family would really like to see passed to prevent this type of discrimination.

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To date, 17 states have adopted similar legislation.

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