Opelika child with rare disease celebrates milestone and raises awareness

Opelika child with rare disease celebrates milestone and raises awareness

OPELIKA, AL (WSFA) - An Opelika boy with a fatal disease celebrated a major milestone Wednesday.

Porter Heatherly was diagnosed in 2013, at just 4-months-old, with GM1. GM1 gangliosidosis, an inherited neurodegenerative disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord.

Doctors told his parents Sara and Michael that he only had two to three years to live. On Wednesday he turned 4-years-old.

For more than two years the Heatherlys have helped to promote GM1 research at the Scott-Ritchey Research Center in Auburn University's School of Veterinary Medicine. There a team has been working to create gene therapy treatments for GM1 in cats.

The College of Veterinary Medicine has launched a social media campaign to show the link between human and animal medicine. It is being led by Eufaula veterinarian Dr. Jim Gardner and his wife, Anne.

To support these efforts people can make a donation to GM1 research online, print a flyer from the page, take a photo of themselves with it and email it in. The college will run this campaign until Saturday, October 1st.

On Oct. 1, the community is invited to a fundraising event in honor of Porter's fourth birthday, benefiting the Cure GM1 Foundation. The event will be at the Auburn University Club from 5 to 8 p.m. Last year more than $35,000 was raised for the foundation. To purchase tickets visit this website.

To stay up to date on Porter's progress you can visit his Facebook page

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