Archive for Saturday, May 16, 2009

‘Crazy Dress Day’ promotes understanding of classmate’s disease

McLouth Elementary School fourth-graders Cassie Rice and Hannah Sparks don interesting wardrobes for Crazy Dress Day on Friday. The event started a few years ago in McLouth to bring awareness to mucopolysaccharidosis. Classmate Seth Von Norstrand has Hunter syndrome, a form of the disorder.

McLouth Elementary School fourth-graders Cassie Rice and Hannah Sparks don interesting wardrobes for Crazy Dress Day on Friday. The event started a few years ago in McLouth to bring awareness to mucopolysaccharidosis. Classmate Seth Von Norstrand has Hunter syndrome, a form of the disorder.

May 16, 2009

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Seth Van Norstrand works on an assignment with the help of nurse Nicole Llamas. The McLouth Elementary School fourth-grader has a condition known as Hunter syndrome, which is a form of mucopolysaccharidosis, or MPS. Friday was International MPS Awareness Day.

Seth Van Norstrand works on an assignment with the help of nurse Nicole Llamas. The McLouth Elementary School fourth-grader has a condition known as Hunter syndrome, which is a form of mucopolysaccharidosis, or MPS. Friday was International MPS Awareness Day.

— The fashion police likely would have been handing out citations right and left Friday at McLouth Elementary School.

It was Crazy Dress Day, and students dressed as wackily as they could. Some wore wigs; others clothes that didn’t match. One student even wore underwear on his head for the occasion.

This annual event focuses attention on Hunter syndrome, a form of MPS or mucopolysaccharidosis.

Seth Von Nostrand, a fourth-grader at MES, has the condition. It’s a disorder in which the body’s enzymes are unable to break down and recycle cell material.

His parents, Corey and Misty Von Nostrand, started the event, which each year takes place as close to May 15 as possible. May 15 is International MPS Awareness Day.

Each class views a video about the disorder, and the craziest-dressed student in each class receives a DVD about the disorder.

“It’s all about awareness,” Corey said. “You never what they’re going to be. Some might be doctors or geneticists.”

Right now, doctors expect Seth to live until he’s 13, but previously he was expected to live only to the age of 10. He just turned 10 in April.

Seth, who is profoundly deaf and reads lips, loves to play baseball. Although he’s not able to run and tires quickly, he does bat, which is his favorite part anyway. If he gets a hit, it is an automatic single, and someone pinch runs for him. An extra fielder also is used when Seth takes to defense.

Asked what he thought about people wearing the strange garb to school on Friday, a big grin spread across Seth’s face.

“They’re kind of funny,” he said.

Comments

angel4dennis 6 years ago

This year was one of the funnest I can remember so far! There were lots of kids dressed up in some of the most outlandish outfits I have ever seen! While this is a rare syndrome, everyone should be more aware of it. Let's find a cure! I am going to start looking for my outfit for next year.

mps2mom 6 years ago

We had such a great time!!! Special thanks go out to Mr. Batman and Mrs. Rush for allowing us to come in and disrupt the whole school day for the 4th year in a row!

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