Toddler with rare disease to celebrate birthday, raise funds for a cure

Toddler with rare disease to celebrate birthday, raise funds for a cure

AUBURN, AL (WTVM) - An Auburn family is celebrating the birthday of their son who was not expected to live more than a few years.

In February 2013, Porter Heatherly was diagnosed with GM1 (infantile gangliosidosis) at 4 months old.

GM1 is a rare genetic neurological disease related to the more common Tay-Sachs disease, and Porter has the most severe form.

Learn more about Porter's story by clicking here.

With no cure, life expectancy is just two years old.

In a few days, Porter will defy those odds when he turns 3 years old.

To celebrate, his family is holding a birthday party and fundraiser event to raise funds for GM1 research.

The fundraiser takes place Saturday, Sept. 12 from 5 to 8 p.m. at the Auburn University Club.

Christine Waggoner, a Berkley, Calif. mother whose daughter Iris has juvenile GM1, and who founded CureGM1.org, is attending.

Former Auburn football great Will Herring has enlisted some of his former teammates, including Brandon Cox, Ben Leard and Rob Pate, to participate in the fundraiser as well.

Additionally, the family has received donations such as tickets to the Auburn v. Mississippi State football game, Yeti coolers, beach vacations, and other items for a silent auction.

Proceeds will support CureCM1.org, which supports research at Auburn University.

Tickets can be purchased at www.curegm1.eventbrite.com.

More information can be found on the Prayers for Porter Facebook page. To learn more about GM1 visit this link.

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