CULLMAN, Ala. – St. Paul’s Lutheran School in March named alumnus Michael Heatherly as the recipient of its second Impact Award, said to be inspired by 1 Peter 4:10-11:
“Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms. If anyone speaks, they should do so as one who speaks the very words of God. If anyone serves, they should do so with the strength God provides, so that in all things God may be praised through Jesus Christ. To him be the glory and the power for ever and ever. Amen.”
After graduating from St. Paul’s, Heatherly went on to study at Wallace State and Auburn University, where he graduated in 2008 with a B.S. in Forestry. He is currently Vice President/Chairman of Sizemore & Sizemore, Inc., a Tallassee-based firm specializing in forest appraisal, analysis and management.
Heatherly was named for the award based on his work in fundraising for patient support and research on GM 1 Gangliosidosis, a genetic disorder that affected his son Porter. The child was born in Sept. 2012 and was diagnosed only a few months later. The rare disease affects about one in every 200,000 infants and, according to the National Institutes of Health, “progressively destroys nerve cells (neurons) in the brain and spinal cord.” Porter’s was the first recorded case of childhood GM 1 in Alabama.
Michael Heatherly and his wife Sara Heatherly have, for years, both during their son’s battle with the disease and since his passing in 2016, worked to increase awareness of GM 1 and promote fundraising for research and treatment. During Porter’s lifetime, he and his parents helped support researchers at Auburn University’s veterinary medicine Scott-Ritchey Research Center who were working on a potential human treatment based on previous animal research.
On Thursday, Michael Heatherly talked to The Tribune about being named for the award.
“I think it was a big honor to have been named for the award,” said Heatherly. “I didn’t expect that, and feel like there’s a lot of very deserving people out there, so I was honored and privileged to have just been thought of as somebody that’s even in the running for something like that, much less to have gotten it.”
Heatherly’s son Porter seemed healthy at birth, but it would take months for the parents to learn the full extent of their son’s disorder.
Said Heatherly, “Throughout Sara’s pregnancy, everything was perfectly normal—all of her doctor’s appointments and checks—and everything was good. And when he was born, well, he was a perfectly healthy baby boy to us.”
At around four months of age, the couple noticed that Porter seemed to be developing more slowly than he should, and that he had developed an eye twitch. A vision specialist in Birmingham discovered marks in the boy’s eyes indicating a possible genetic disorder and sent the family to UAB Medicine the same day. Within two weeks, the Heatherly’s received a diagnosis that would take some time to process and understand.
Said Heatherly, “We thought that the worst case scenario was that he was going to not be able to see well and that maybe he had some other delays, some other issues going on, trying to figure out what that was.”
Then they found out the truth: that their son had a terminal disease with no known cure, or even a treatment that might slow down its progress. The couple looked nationwide, and then around the world for anything that might help, to no avail.
“So basically, from then on, we joined the Tay Sachs and Allied Disease Foundation. We registered with them so that we could connect with some other families. And through that, we found out about the research that was going on at Auburn, that we had no idea about. So it turns out that the lead researcher at Auburn is a member of the same church that we attend now in Auburn, and there’s just a lot of connections there.
“So, from that point on, we found out that Auburn had been doing this research on these cats that had GM 1 for many years. And we tried to get involved any way we could, knowing that anything that was done as far as the progress that was made was not likely going to help Porter in any way, but we just didn’t want other families to be in the situation that we were with getting this diagnosis and saying, ‘Okay, there’s no hope; basically, there’s no cure.’ And so, that’s kind of where we got on the mission to see what we can do to help raise money and help push this research along, the best that we can.
“And it kind of gave us something to look forward to, definitely kind of allowed Porter to make the impact in his time here by helping to raise money and push that research forward.”
Over the years, the Heatherly’s have raised over $200,000 for GM 1 research and support of patients and their families. Porter became a hero of the cause, attending fundraising events and visiting with the very scientists who were battling the disease that was claiming his life.
Three years after Porter’s death, researchers at Auburn, funded in part by the efforts of the Heatherly’s, conducted the first human trial of an experimental GM 1 treatment. Since that time, other trials have begun.
“It’s still kind of early to see how that’s going to go,” said Heatherly, “but I feel like all the feedback we’ve gotten so far has been positive and, hopefully, it’s slowed down some of the regression of the disease. But they’re going to be constantly trying to improve on what’s been started.”
Years from now, when teachers at St. Paul’s talk to their students about Impact Award winners, what do you hope they remember about you?
Heatherly hesitated for a few moments, then answered, “The reason, I feel like, that I’ve been chosen for this is because of Porter, and because of his life and the impact that he made, and the impact that he left behind. So I feel like most of this should be credited to him. And I think it’s awesome, and I’m very proud he’s made such an impact.
“I hope that when people hear my name or see my name on this, that they also think about Porter and look into his story, and the legacy and impact that he made while he was here, too. I think that’s what it’s all about: it’s the Impact Award and the impact you leave on people. In this case, it’s not so much myself, but the impact that our son Porter has made. And I hope that people will remember him whenever they think about me.”
More about GM 1 Gangliosidosis and the Heatherly’s efforts can be found at www.facebook.com/Prayers-for-Porter.
On his Facebook page, Heatherly quoted Jeremiah 29:11 – “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’”
The Impact Award will be presented at the St. Paul’s Alumni and Friends Dinner scheduled for May 15 2021, at Seasoned Catering, 316 Second Avenue SW in Cullman. Tickets for the event are available through www.stpaulscullman.com.
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