Kids dress down for disease awareness

Cassie Rice, second-grader at McLouth Elementary School, dons unusual garb for Crazy Dress Day at the school. Tuesday's event helped raise awareness of second-grader Seth Van Nostrand's disease, a type of mucopolysaccharidosis disorder, also called Hunter syndrome. Rice was awarded craziest

From left Cassie Rice, Jacob VanDyne and Jesse Walbridge, second-graders at McLouth Elementary School, found wild things to wear to school for Crazy Dress Day. Tuesday's event helped raise awareness of Hunter syndrome, which their classmate Seth Van Nostrand has.

? Students didn’t worry about matching their socks and shoes Tuesday at McLouth Elementary School. Some wore several hats or didn’t even bother to comb their hair.

But they still fit in at school. That’s because it was Crazy Dress Day at the school in honor of second-grader Seth Van Nostrand, 8, who four years ago found out he had the rare disease known as Hunter syndrome, a type of mucopolysaccharidosis disorder or MPS.

The day marked an opportunity for students to have fun, learn about the disorder and show support for Seth and his parents, Corey and Misty Van Nostrand.

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

“It’s a genetic disorder,” his dad said. “He was born with it. It’s not something that can be passed around. It just kind of happens.”

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

Seth’s left hip is virtually gone, his mother said, and he gets tired easily. He can speak but is almost deaf.

But, his dad said, he is an excellent lip reader.

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

He quietly sat at his desk like his 14 classmates as his father answered questions about MPS and 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 oversized blue-and-red hat.

Seth helped select the “craziest dressed” classmate. The winner was Cassie Rice, 8, who wore a red bandanna, 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.

Teacher Linda Martin said the class adored Seth.

During cold winter days, he couldn’t play outside so students would volunteer to stay inside with him during recess, 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.”

Seth’s classmates feed off 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, such as his shrinking tongue and liver, his mother said.

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

“We discuss things a lot with (Seth). We keep him in the loop because he’s the one who goes through it all,” Corey Van Nostrand 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.