Parents fight to get ‘Gracie’s Law’ passed after infant daughter undergoes heart surgery

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MILLEDGEVILLE, Georgia (41NBC/WMGT) — Parents of an 11-month-old girl are fighting to pass a bill that will grant children with disabilities access to organ transplants.

Mother and father, Erin and David Nobles showed up at Georgia College Monday morning to explain a new discrimination prevention bill that they introduced to state lawmakers. 

They call the bill “Gracie’s Law” — also known as House Bill 842.

“Gracie’s Law is a bill that we are pushing through the 2020 legislative session to prevent organ transplant discrimination,” shared Erin.

As it stands, Georgia does not have a law to prevent discrimination among the disabled who need life-saving transplants. However, the Nobles are working to change that.

“As of 2019, only 12 states have enacted this law despite that there is federal provision for protection,” added the mother.

Gracie’s story

Gracie was born with down syndrome and spent nearly 17 days in neonatal intensive care. At three months old, she had successful surgery to repair a hole in her heart. 

If Gracie needed a transplant, her parents feel the infant would have been denied.

“She was on a lot of medicine that was damaging her kidneys,” David said. “She was in congestive heart failure and had gotten a bit of pneumonia at one point.”

After an intense battle, unsure of their daughter’s survival, the Nobles started campaigning to protect other children and families.  

“I believe that Gracie’s Law is going to save lives,” David said.

Supporters of the Nobles say they are unaware of the lack of legal protections.

“I was appalled,” said Angie Childre, a supporter and close friend to the Nobles. Nonetheless, Childre believes state lawmakers will do the right thing.

To follow little Gracie’s journey, connect with the family’s Facebook group at Gracie’s Law.