Archive for Wednesday, May 28, 2008

McLouth Elementary School students dress ‘crazy’ to show support for fellow third-grader

Crazy Dress Day raises awareness about mucopolysaccharidosis

May 28, 2008

McLouth Elementary School students Katie Gill, left, and Dimitri Tullis watch a video about mucopolysaccharidosis, or MPS, Thursday in the school cafeteria. Seth Van Nostrand, an MES third-grader, has Hunter syndrome, a type of MPS. Thursday was Crazy Dress Day at the school, which was done to raise awareness about MPS and show support for Seth and his parents.

McLouth Elementary School students Katie Gill, left, and Dimitri Tullis watch a video about mucopolysaccharidosis, or MPS, Thursday in the school cafeteria. Seth Van Nostrand, an MES third-grader, has Hunter syndrome, a type of MPS. Thursday was Crazy Dress Day at the school, which was done to raise awareness about MPS and show support for Seth and his parents.

Seth Van Nostrand wasn't able to attend the third annual Crazy Dress Day at McLouth Elementary School on Thursday.

However, fellow third-graders and other MES students did their best to make Seth feel as though he were there.

Seth, 9, has Hunter syndrome, a form of mucopolysaccharidosis, or MPS, a disorder in which the body's enzymes are unable to break down and recycle cell material.

The past two years, Seth attended Crazy Dress Day, an event created to bring about awareness of MPS, which affects just one in 150,000 live births.

This year, Seth was not in school because of hydrocephalus, or pressure on the brain. Misty Van Nostrand said her son has been at Children's Mercy Hospital in Kansas City, Mo., since May 9 to correct the problem. With dad Corey Van Nostrand staying at the hospital with Seth, Misty visited the school Thursday. She showed a video explaining what MPS is and answered students' questions.

To help Seth feel as though he were at the event, students waved to a video camera, which will be shown to Seth at the hospital. Fifth-grade students also made get-well cards.

On Crazy Dress Day, students wore mismatched wardrobes to show support for Seth and his parents.

In all, Misty said Seth has undergone roughly 30 surgeries. She said the family has medical insurance, but the expenses can at times put a strain on finances.

"It's a big prayer to the man upstairs that he comes through it OK," Misty said about coping with Seth's condition.

The life expectancy for those with MPS is 10 to 20 years.

When Seth's health becomes more stable, Misty said she'd like for her family, including sons Darian, 13, and Kent, 5, to start a run/walk for MPS awareness.

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