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Families fight to change law that keeps people with Down Syndrome off organ donor list

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    MINNEAPOLIS (WCCO) — Parents in Minnesota and Wisconsin are pushing for equal treatment for their kids. Currently people with certain disabilities like Down syndrome can be denied an organ transplant due to outdated laws.

WCCO shares how families are taking their fight to lawmakers to make transplant discrimination a thing of the past.

Just 10 weeks into her pregnancy, Geri Cuskey learned their third child would be born with Down syndrome.

“Many people would say I’m sorry but looking back I want to say what are you sorry for,” Cuskey said.

Morgan just turned one. Her mom and aunt are just some of the small army in western Wisconsin fighting to better protect her in the future should Morgan ever need an organ transplant.

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

Morgan’s godparents found that in Wisconsin, when it comes to transplants, people with neurological disorders may be discriminated against.

“This is a matter of life,” Jayne Jones, Morgan’s godmother, simply stated. “People with intellectual disabilities or IQ’s below 70 have a very hard time getting on the transplant list.”

Jones learned the majority of transplant centers take a disability into account as a reason to say no.

Some doctors worry the patients may not comply with post-transplant requirements, opening them up to liability.

In Minnesota, Johnny’s Law may soon prevent that from happening here. That 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 that we needed 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.

17 states have so far passed similar legislation.

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