Young girl is inspiration for state bill to support people with disabilities

A 3-year-old girl is AN inspiration behind a new bill in North Carolina called Bethany’s Law.

“It was just crazy to me, so I knew, we knew, we wanted to make a change,” said Robin Matthews, Bethany’s mother. “Not only for our daughter but all people with disabilities.”

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Bethany was born with Down syndrome.

Justin and Robin Matthews experienced hurdles that they did not know existed.

Christina Reaves is with the North Carolina Down Syndrome Alliance.

“It is something that we need to do as a community, raise awareness that our kids are not eligible for a transplant,” Reaves said. “Most people don’t even realize that that’s an issue.”

The Matthews family advocated for more than a year for laws in the state to be changed.

The recently filed bill prohibits organ transplant discrimination based on disability by health care providers, donor-matching entities and health insurers.

Reaves said family members with Down syndrome are often disqualified for that reason.

“That person or individual would need to do a lot of self-care and would fall on their parents or their caregivers,” Reaves said. “And that is pretty much the sole reason that we’ve been told they’ve been denied in the past.”

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Bethany does not currently need a transplant, but the bill is for those who do need the surgery.

“We have a family that has a young boy right now that is likely going to need a kidney transplant,” Reaves said. “I believe he’s 4 years old right now, and I believe they’re looking around his teenage years. So, there’s a lot of work to be done.”

“That was one of the main reasons we wanted to label the bill Bethany’s Law because one day she’s going to have questions. I want to be able to tell her, look, you made a difference.”

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Cox Media Group