Auburn University recognized Cullman natives Sara and Michael Heatherly prior to Saturday’s Iron Bowl. The Heatherly’s son Porter died from the rare genetic disease Gangliosidosis, referred to as GM1, in 2016. Porter was the first Alabama child known to have GM1.
A few months after his diagnosis, the Heatherlys learned about the GM1 research being done at Auburn, and that one of the researchers was Doug Martin, who attends church with them at Auburn United Methodist.
Martin invited the Heatherlys to come to Auburn’s Scott-Ritchey Research Center so the research team could meet Porter.
“We had a feeling that Porter probably would not be able to receive a treatment,” Sara told the Opelika-Auburn News earlier this year.
“But we had made a commitment to Dr. Martin and to all the researchers there that we were going to do everything we could to promote it, to talk about it, to make people aware. And that’s what we did.”
“From the time we found out about the research, when he was just 6 months old, it just gave his life more purpose, knowing that anything that we were able to do to promote this research and move forward, using his life as an example, was something that would leave a legacy. And I think it has,” Michael told the Opelika-Auburn News.
Working with researchers at the University of Massachusetts, Auburn University this year celebrated the first treatment that has gone to human clinical trial.
The Associated Press contributed to this story.