Baby's health condition spurs fight for Gracie's Law
Baby's health condition spurs fight for Gracie's Law
Just over a year ago, Gracie Joy Nobles was born with Down Syndrome and a hole in her heart. It was her fight for life that inspired her parents Erin Nobles, ’06, ’13, and David Nobles, ’06, to use their leadership skills to push a House Bill (HB) bearing their daughter’s name through state legislation. If this bill becomes a law, it would enable Georgians with disabilities to be placed on the organ transplant list.
After Gracie was born, she developed congestive heart failure and stayed in the hospital for 17 days. During that time, Erin and David endured many sleepless nights and emergency room visits.
At three months of age, she underwent surgery to fix her heart. Gracie recovered and went home.
“It was like living a nightmare,” said Erin. “She was so sick and frail during that time in her life.”
For about four months, the Warthen, Georgia, couple kept a bag packed in the car—just in case.
“It was a very unstable time in our life,” said David. “You really couldn’t live from day-to-day. It was by hour-to-hour and minute-to-minute, because Gracie could be fine one minute and then overloaded with fluid the next. Then, we’d have to go back to the hospital.”
Erin, a nurse practitioner, had to quit her job to care for Gracie, while David worked as a community supervision and field training officer with the Georgia Department of Community Supervision.
The couple began to think about the consequences if Gracie had needed a transplant, she wouldn’t have been able to get one, as she has Down Syndrome because, Georgia law doesn’t allow for disabled residents to be placed on the organ transplant list.
Erin and David researched the situation and discovered Evie’s Law. Enacted in 2019, this law enables Louisiana residents with disabilities to get on the organ transplant list. They contacted Evie’s father for guidance and began the legwork for what would become Gracie’s Law to end organ transplant discrimination among Georgians with disabilities.
In 2019, David contacted State Rep. Rick Williams (R-Milledgeville), who stated he would introduce Gracie’s Law to the Georgia House of Representatives during the 2020 legislative session. The legislation, cosigned by State Rep. Mack Jackson (D-Sandersville), was introduced and assigned as HB 842.
Thrown into the legislative process, Erin and David, quickly realized they could apply the leadership skills they learned at Georgia College to fight for Gracie’s Law.
“Being in nursing at Georgia College and a member of Sigma Theta Tau International Honor Society of Nursing, you really are trained to be a leader,” Erin said. “It’s expected that you’ll be one when you graduate. That was ingrained in us. Although, I never thought of myself being a leader in this area. When I envisioned leadership, I thought of maybe being a charge nurse. This was totally on another playing field.”
David also never thought he and Erin would be placed in a position to fight for legislation to become a law. But, even though he didn’t realize it as a student, David’s professors helped prepare him for the fight for Gracie’s Law.
“We’re not legislators,” he said. “We didn’t come from families or backgrounds that are cultivated in this culture. And, so really, the only exposure we had of this was in our classes at Georgia College.”
I had professors who provided a bit of leadership exposure in class to show us that this was not out of reach for us,” said David. “We learned if something needs to be changed, it’s possible to change it.”
Although David never saw himself as a leader, he managed to earn a 2010 leadership award at work.
“I just see myself as taking authority over a situation, as it arises, as in Gracie’s Law,” he said. “You don’t always see the purpose of what you’re being taught until it manifests later.”
On Jan. 29, the Nobles and university doctoral nursing students Angie Childre and Kimberly Griffin attended the Georgia Council for Developmental Disabilities’ Advocacy Day at the capitol in Atlanta to advocate for Gracie’s Law. The couple told their story to a crowd of about 100 people. Childre and Griffin also helped educate state legislators about the need for the law.
“That was a once-in-a-lifetime opportunity,” said Erin. “We got to meet so many amazing people, who were ordinary citizens like us. And, to be able to see our representatives announce Gracie’s Law with such enthusiasm was just phenomenal.”
The couple has documented their journey on their Facebook Page, titled “Gracie’s Law.” They understand how their story might impact others. Their daughter wasn’t supposed to live but is alive and well today, because of the great care she received. The Nobles want to pay it forward and help others with disabilities.
“I just never saw us in a role like this, but the fact that we’re here, I couldn’t be more grateful that this House Bill is getting the attention that it deserves,” said David. “This law could potentially save lives.
On Feb. 3, Erin gave an inspiring talk on campus to Georgia College nursing students.
“My hope for this day is that these young, impressionable college students will have a seed of hope planted into them,” Erin said. “because one thing David and I learned is—you can go from hearing someone else’s story to living your own story in a matter of a blink.”
“David and I have heard other people’s stories, and you always say, ‘Glad it’s them and not me,’” she said. “But in a nanosecond, it can be you.”
Currently, HB 842 is moving through various committees with legislative testimonies from the House and Senate. The couple hopes Gracie’s Law continues to move smoothly through this process and that it will be on Gov. Kemp's desk for him to sign soon.
When the couple looks back on the experience, they’re just thrilled with how healthy Gracie has become and what her law represents.
“She’s taught us so much,” David said. “We’ve seen miracle after miracle. And now, to go through all of that we’re standing in the House Chamber of the Capitol and being recognized with the whole house with our daughter who was not supposed to live—it’s just been a whirlwind of emotion. It’s been an incredible journey.”