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WDAY: The News Leader

Published March 17, 2013, 09:27 PM

Money is raised for medical research at the "Mark Noah Charity Mite Jam"

Fargo, ND (WDAY TV) -- The parents of a Fargo boy with a rare genetic disorder held the largest ever fundraiser for the syndrome this weekend.

By: Becky Parker, WDAY

Fargo, ND (WDAY TV) -- The parents of a Fargo boy with a rare genetic disorder held the largest ever fundraiser for the syndrome this weekend.

Mark and Gretchen Noah say the "Mark Noah Charity Mite Jam" was the next step after six years of successful charity walks to raise money for medical research.

It's competition for a cause.

Gretchen: "Teach them about philanthropy and about giving to others, and yet still have fun at the same time."

16 teams of mite hockey players, mostly from the Fargo area, played in the first ever Mark Noah Charity Mite Jam.

"Markie," as he is commonly known, is a 9-year-old Fargo boy with Smith-Lemli-Opitz Syndrome.

Mark: "He's got mild cognitive delay, he's got various other medical anomalies, like a heart defect and some other things. But being on the mild end of the spectrum, we're quite blessed."

For the past six years, his parents Gretchen and Mark have held a walk to raise money for the rare disorder.

This year, knowing Markie's love of hockey, they decided to start a whole new project.

Mark and Gretchen say the reason they got so involved, is because of how mild Markie's condition is. They wanted to help people who have it much worse. And Gretchen is actually now the president of the foundation."

Gretchen: "After a number of years, you raise enough money, they'll put you in charge."

The Noah's have raised about 150-thousand dollars since Markie was diagnosed.

That money goes to research and medical advances, so maybe someday other kids with the syndrome will be able to hit the ice and play hockey, like Markie did in the tournament.

Gretchen: "We just appreciate him every single day that he is able to be here living with the syndrome."

Around one in 20-thousand people are diagnosed with the syndrome.

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