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

Comments (5)
  1. Amy M. says:

    Heather is an incredible woman! She helped me by providing support when our first son was diagnosed in 2009! Could not have survived the first year without her!! It’s reassuring as a mom of 2 young kids with GSD, to see how successful our children can become!

  2. Bethany says:

    Heather does work hard to help others and can give a lot of young women and men out there with this disease and others in the same family of disease a lot of hope for the future.

  3. Claudia Guerra says:

    she is a hope for all of us who have childrens with same disease. thanks for helping us!!

  4. barbee says:

    God Bless you in your triumph, Heather.
    It is my hope that you can find a good source of non-GMO, organic corn starch for your needs. That way, w/ God’s help, we can keep you with us that much longer.

    SO! Any Non GMO, organic manufacturers out there willing to step up to the plate? I would respect any mfgr who did.

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