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To learn more about the story of Dylan and Jonah, and Dylan’s goal of raising $1 Million dollars for Glycogen Storage Disease research, visit Chocolate Bar Book.

Woman Must Eat Cornstarch to Stay Alive

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. (Hailey’s Promise)


(via Collinsville Family Prays For A Cure For Children’s Rare Disease)


Everyone with children remembers those overnight feedings, and of course, we remember when they ended. But what if they didn’t end?

One parent is up every two or three hours every night for the foreseeable future, that’s what life is like for a Collinsville family. Their two younger children require regular feedings every three hours of every night. Wait until you hear what they are eating.

They are the Marshalls’ kids from Collinsville, sisters Kamilynn, and Brynlee, brothers Beckett and Harrison, ages 7 to 20 months.

You’d never know it, but the boys have a very rare disease called Glycogen Storage Disease. Their livers don’t process sugar properly, so without a regular supplement, the supplement is corn starch.

“This is what we go through in about two days,” Amy Marshall said.

It keeps their blood sugar at a consistent level. The Marshalls buy it by the case at Sam’s Club, a simple sounding answer to a very complex problem.

“They couldn’t just eat more often, the food is not enough, the corn starch is what they need,” Ryan Marshall said.

Not just an occasional supplement, they showed us the schedule. A prescribed amount mixed with cold water, every two or three hours of everyday, conceivably forever.

“They’ve fallen through the cracks of the system,” Ryan said.

Because there are so few cases, only one other in Oklahoma agencies that might provide assistance have to become educated. The Marshalls say the process is endless.

The kids’ immune systems are weaker, so germs are a problem.

“We try to stay out of public places,” Amy said.

Even minor illnesses can result in a hospital stay. Daily routine is onerous enough. Every night, they put together an “overnight basket” pre-measured containers for each boy. They’ve got to check blood sugar ever two hours too.

The Marshalls hope and pray for a cure. Until then, they do all they can to ensure the kids are as healthy and happy as possible.