Family spreads awareness about rare genetic disorder

3-year-old Clayton Gard has SCN8A or Cute Syndrome.

Posted: Sep 23, 2018 7:32 PM
Updated: Sep 23, 2018 9:10 PM

MARSHALL, Ill. (WTHI) - A Wabash Valley family is educating others on a rare, but devastating, disorder.

3-year-old Clayton Gard has SCN8A or Cute Syndrome.

It's a genetic disorder that impacts parts of the brain. It can cause seizures, lack of walking or talking skills and little or no head control.

Because it's so rare, doctors have a hard time treating it. That's why the Gard family has been raising money for awareness and research since his diagnosis.

News 10 caught up with Clayton's mother during an event on Sunday. That's where they had a table set up for Clayton's Crusade for SCN8A.

"Just being home you take for granted being able to leave the house without having to worry about his rescue medication," said Megan Gard, mother, "How long are we going to be gone because he takes medication three times a day, so having to plan all that out."

The Cute Syndrome affects about 350 children worldwide. 

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