ATLANTA, Ga. (WTOC) - A Georgia family and their local representative have been working to pass legislation that would protect organ access for Georgians with disabilities.
“We’re talking about lives here. We’re talking about a situation that could save a life. This is not just a feel good, do good bill,” said Representative Rick Williams (GA-145).
Gracie Joy Nobles was born with Down Syndrome and has a heart defect. Her parents David and Erin say their life was turned upside down for a while.
“She started going into congestive heart failure. We went back to the hospital and spent another month or two in the NICU,” said David.
Luckily Gracie’s heart surgery was a success, but it wasn’t until the Nobles family got home that they realized a big “what if?”
“If Gracie would’ve needed a heart during all of this, there might have been obstacles that we face,” said David.
The Nobles were concerned that a person’s disability could limit their chance of receiving a life-saving organ transplant. Something Michelle Pendergrass says she went through with her sister who also has Down Syndrome and went into kidney failure. Pendergrass says the doctors told her that her sister wasn’t a good candidate for a transplant and that it’d be better for her to go on dialysis.
“I said, ‘Why? You haven’t done any tests yet.’ There was no diagnostics, no medical evaluation, they hadn’t seen any of her files or paperwork from her other doctors etc.” said Pendergrass.
Erin Nobles says she often gets asked why there needs to be a bill like this when there’s federal legislation that covers it, such as the Americans with Disabilities Act.
“If you are fighting a case of discrimination the parents have to take this to federal court and there is the problem. Because in federal court you may not get on the docket for six months to two or three years. Our community of people do not have time on our side to wait,” said Erin.
Representative Williams has worked closely with the Nobles on this bill. During this legislative session Williams says it passed unanimously in the Georgia House of Representatives and now it’ll go to the Senate.
“I can promise you when this thing gets to the Senate floor there will be every senator signed on it too. This little Gracie, she melts your heart,” said Williams.
“When Gracie’s Law passes, if a family member is actively discriminated against or a person, a loved one with a disability, the family members can fight this fight in the local courts. They can get their case on the docket within 30 days, not three years,” said Erin.
Pendergrass, the Nobles family and Williams all say they’re hopeful that one day no one will have to go through this discrimination.
“I had hoped that we had come far enough with disabled people and people with Down Syndrome that I wouldn’t have ever run into that. I was just amazed that I did,” said Pendergrass.