Opelika toddler diagnosed with rare disorder passes away

Opelika toddler diagnosed with rare disorder passes away

OPELIKA, AL (WTVM) - Porter Heatherly, the young Opelika boy who battled a rare disorder since 2013, has passed away at four years old.

When he was four months old, Porter was diagnosed with GM1 (infantile gangliosidosis), a rare genetic neurological disorder that attacks the nerve cells in the brain and spinal cord.

The disorder is related to the more common Tay-Sachs disease, and Porter had the most severe form.

There is no cure for GM1, and life expectancy is just two years old.

Porter defied those odds and recently celebrated his fourth birthday earlier this year.

Shortly after he was diagnosed in 2013, his parents Michael and Sara started the Facebook page "Prayers for Porter" to help raise awareness for GM1 and other rare genetic disorders.

In 2015, the Heatherly's decided to celebrate Porter's third birthday with a party and fundraising effort with proceeds going towards research for a cure. They celebrated his fourth birthday the same way.

Visitation will be held at Frederick-Dean Funeral Home in Opelika on Friday, Nov. 11 from 6 to 8 p.m. CDT. His funeral service will be held at Auburn United Methodist Church in Auburn on Saturday, Nov. 12 at 11 a.m.

To learn more about GM1, visit this link. If you would like to make a donation to Auburn University's Scott-Ritchey Research Center to help find a cure, click here.

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