Local family opens up about terminally ill son

Doctors said Porter could stop breathing at any minute.

OPELIKA, Ala. – A local family is using their son’s 3rd birthday party as a way to raise money for a rare disease, Gangliosidosis.  Commonly known as GM1, the illness destroys the nerves in the brain and spinal cord.

Doctors diagnosed Sara and Michael Heatherly’s 2-year-old son, Porter, with GM1 when he was four months old.  His parents took him to the doctor when they noticed a twitch in his eye.

“Definitely a whirlwind of emotions from thinking that he may not be able to see or that he could possibly be blind or losing his vision to now knowing that he’s terminally ill.  And he might not even live to be two,” Sarah and Michael Heatherly explained.Doctors said Porter could stop breathing at any minute.

Porter’s parents said doctors did not expect him to live past the age of two.  Porter will be 3 on September 14.  The birthday part fundraiser is a raffle and auction.  The money will be used to help find a cure for GM1.

The Heatherly’s said they know it is too late to cure their son, but hope a cure will be able to save other lives.  The College of Veterinary Medicine at Auburn University has researched GM1 for more than 30 years.  One doctor at the school has had success curing cats suffering from GM1.  The Heatherly’s are pushing to get this cure tested in humans.

Porter is the only known case of GM1 in Alabama.  Doctors said he could stop breathing at any moment.

The Fundraiser is Saturday, September 12 from 5 to 8 p.m.  It will be held at the Auburn University Club, 1650 Yarborough Farms Boulevard.  The Heatherly’s said everyone is invited.  Tickets can be purchased online here.

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