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GREENWOOD VILLAGE, Colo. (CBS4)- A young wife and mother with a potentially deadly disease is looking for help finding a cure. All her life she’s had to stick to a strict diet to stay healthy and that includes plenty of corn starch.
Heather Edwards must stick to a strict diet with no fruit, no milk and no candy. Her liver cannot process the sugars. She suffers from what is called Glycogen Storage Disease or GSD.
GSD is a rare genetic disorder that affects the way the body breaks down food into energy.
Edwards was diagnosed with the GSD when she was only four months old. She needed a feeding tube to get nutrition and maintain her blood sugar. The simple answer to the complicated problem was corn starch.
“Corn starch is basically a complex carbohydrate that breaks down really slowly through your intestines versus your liver,” said Edwards.
Every day Edwards prepares six doses. She mixes corn starch with water and drinks it every few hours, even in the middle of the night. She could die if she doesn’t drink the corn starch.
Edwards said GSD is so rare she is literally one in a million people. She has a cupboard filled with corn starch and always carries some with her.
“I like to think of myself as a role model and try to help the families with younger kids out there to give them hope,” said Edwards.
Edwards and her husband, Jonathan, have started a foundation to fund research to find better treatments and a cure for GSD.
She travels to Florida once a year to see a specialist and has set up a donation site through the University of Florida named after her daughter, Hailey.
RELATED LINK: Hailey’s Promise