Archive for Wednesday, May 16, 2007

Students mark Crazy Dress Day in honor of afflicted classmate

May 16, 2007

Students didn't bother to match their socks and shoes Tuesday at McLouth Elementary School.

Some wore several hats or didn't even comb their hair.

The wardrobe choices were just fine for the day at the school's second annual Crazy Dress Day in honor of second-grader Seth Van Nostrand, 8, who was diagnosed four years ago with the rare disease known as Hunter syndrome, a type of Mucopolysaccharidoses disorder or MPS.

The date marked a chance for students to have fun, show support for Seth and for Seth's parents, Corey and Misty Van Nostrand, and his aunt, Sherri Withers, to educate the students about the disorder.

One of Seth's classmates asked: How'd he get this disease?

"It's a genetic disorder. He was born with it. It's not something that can be passed around. It just kind of happens," Seth's dad, Corey Van Nostrand said.

Misty Van Nostrand said she knows of two other children diagnosed in Kansas and one in Missouri. Caused by the body's inability to produce specific enzymes to help break down and recycle cell material, Hunter syndrome causes a host of problems with the brain and all major organs and joints.

Seth's left hip is virtually gone, his mother said, and he gets worn out easily. He can speak but is almost deaf and is an excellent lip reader, his dad said.

As his one-on-one nurse, Donna Downing, wheeled him into his classroom Tuesday, Seth had dressed appropriately with a tie-dyed T-shirt that didn't match his shorts. His blond hair poofed out wildly.

He quietly sat at his desk like the 14 other students as his father answered questions about Hunter syndrome.

"He's friends with everybody in the classroom, and he's nice to everybody," said 7-year-old Jesse Walbridge, from underneath his over-sized blue and red hat.

Later, Seth happily walked around the classroom and helped his aunt and mother select his "craziest dressed" classmate.

Cassie Rice, 8, won. She wore a red bandana, a white-and-red checkered shirt, two neckties, a blue Mickey Mouse skirt, a black cowboy boot on her left foot and a pink slipper on the right.

The students adore Seth. During cold winter days, he couldn't play outside, so students would volunteer to stay inside with him during recess, his teacher Linda Martin said.

At Thanksgiving, all of the students said they were thankful for Seth.

"That was really cool, and they did it all on their own," Martin said. "So Seth's really special to us."

They feed off of his bravery, his teacher said. He misses every Monday at school to get an enzyme infusion at Children's Mercy Hospital.

The recently developed treatment for the so far incurable disease has improved Seth's quality of life and controlled his symptoms, like shrinking his tongue and liver, his mother said.

The family moved two years ago from Lawrence to a home near the Jefferson County line, and the McLouth district, including principal Butch Batman, have provided support, the Van Nostrands said.

Seth's courage is evident. The life expectancy for those who suffer from the disease is 10 to 15 years.

"It's so much easier for him because he's a very strong kid. It amazes me the amount this child has gone through and he's still that happy," Corey Van Nostrand said.

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