Family joins charge to change law that prevents those with disabilities from getting organ transplants

In North Carolina and many other states, someone can be denied an organ transplant because of a disability.

Some are trying to change that so someone like Bethany, a 3-year-old girl diagnosed with down syndrome at birth, can have access to resources that are sometimes life-saving.

Robin and Justin, Bethany's parents, were disheartened to learn that people with disabilities are ineligible for an organ transplant, meaning if their daughter needed to receive a potentially life-changing organ transplant, she couldn't.

"The last thing somebody wants to hear is a child needs a heart or a kidney or something," Justin said. "And then even worse than that - to hear that they can’t get it because of a diagnosis. If something were to happen, we want to do everything possible to save our children."

The bill states that a mental or physical disability does not diminish a person's right to health care.

Justin and Robin got involved with the North Carolina Down Syndrome Alliance (NCSDA) and brought their concerns to North Carolina representative Michael Wray.

"We just want her to have the same opportunities as someone else," said Christina Reaves, Executive Director of the NCSDA. "Just getting out there right now and getting people to realize hey if your child needs a heart transplant you’re not even eligible at this." "We reached out to Michael Wray and just went from there and got a bill done," Robin said. "So we’re in that process right now."

Currently, 16 states have passed State-level legislation similar to HB 642. Representative Pat McElraft, one of the bill's sponsors, sent WRAL News a statement:

“The sponsors of HB642 think North Carolina residents in need of organ transplants are entitled to assurances that they will not be discriminated against on the basis of their disability. With HB642 we declare that the life of an individual with a disability who needs an organ transplant is as worthy and valuable as the life of an individual without a disability who needs the same transplant.”