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#GSDstrong: Côte Saint-Luc toddler with rare disease enters protein contest for bodybuilders

WATCH ABOVE: Just before she turned two, Charlotte Carson was diagnosed with Glycogen Storage Disease, a rare genetic disease that means she needs to consume more protein than most. As Global's Billy Shields reports, protein isn't covered by insurance, so the family has entered a contest to win a year's supply – Oct 20, 2016

Lauren Wodnicki has entered her three-year-old daughter, Charlotte Carson, who suffers from a rare congenital illness, in a contest to win a year’s supply of protein.

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The contest is usually aimed at bodybuilders, but winning could mean a chance to provide Charlotte with life-saving treatment that is under-covered by typical health insurance plans.

Just before she turned two, Charlotte was diagnosed with Glycogen Storage Disease (GSD).

Most people store glycogen in their liver and release it during the day when their blood sugar gets low, but the bodies of people with GSD consume protein in the form of muscle tissue.

If left unchecked, it’s a potentially life-threatening condition.

The problem is that it’s a very rare and misunderstood disease, so traditional health insurance schemes don’t cover one of the most effective treatments – consuming a large amounts of protein.

“It’s been proven that [protein supplements are] healthy, they’re safe,” said Wodnicki.
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“They allow children and adults to lead happy, healthy, normal lives and that’s what I want for my daughter.”

Charlotte needs five doses of raw corn starch a day to keep her from hypoglycemia.

According to Dr. David Weinstein, of the Glycogen Storage Disease Program at the University of Florida, there’s a lingering stigma surrounding the treatment of GSD, which can involve eating household foods like corn starch and gravy.

“Most people find it hard to believe that you treat an illness like this with things you’d find at a grocery store,” he told Global News.

Consequently, Charlotte’s family said the provincial health care system won’t cover many alternative treatments.

The family is relying on donations in order to bring Charlotte to Gainesville, Fla. to visit Dr. Weinstein.

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So, when Wodnicki saw the Canadian Protein contest, she decided she had to give it a shot.

The company is asking the public to vote for the most deserving of 40 people who would be sponsored by the company and given a year’s supply of protein supplements.

Charlotte’s photo appears alongside buff and oiled bodies of bodybuilders.

Charlotte Carson, 3, who needs protein in order to live, entered a contest typically aimed at body builders to win a year’s supply of protein. Canadian Protein

As her mother pointed out, a protein used for building muscle mass is something that could allow Charlotte to live normally.

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“There’s no reason for any child with GSD not to be healthy and they need to take notice of orphan and rare diseases and put as much attention to that as they do to more common illnesses,” insisted Wodnicki.

So far, the toddler has gotten more than 2,000 vote, about 1,000 more than the nearest competitor.

The contest ends at the end of October.

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