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Archive for Friday, May 16, 2008

Students dress ‘crazy’ to show support for classmate

May 16, 2008

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McLouth Elementary School students Katie Gill, left, and Dimitri Tullis and third-grade teacher Brandi Wright 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 is done to raise awareness about MPS and show support for Seth and his parents.

McLouth Elementary School students Katie Gill, left, and Dimitri Tullis and third-grade teacher Brandi Wright 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 is 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.

Comments

KU_Dude 6 years, 3 months ago

Hey consumer1, you're the "Crazy" one. You're posting just like Cool. :-)

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Kristen Murphy 6 years, 3 months ago

Wow. Seriously - get over it. Nobody cares.

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blahblahblah 6 years, 3 months ago

Would you prefer it to be called "Dress like a person on Prozac/Zoloft/Geodon/(insert applicable drug here) day"?

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Hug_It_Out 6 years, 3 months ago

The school called it "Crazy Dress Day". LJW was probably just using the name they had already assigned to the day.

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angel4dennis 6 years, 3 months ago

I am greatful to Misty, Corey, Seth and family. They have so much going on and to take the time out of their lives to raise awareness of this disorder is a blessing. Who else is more qualified to fill us in then those living with it everyday. It saddens me that the only focus consumer1 that you have on this entire article is the fact that we down here call it crazy dress day. Did you see it? CRAZY DRESS DAY, it pertains to nothing about people or their afflictions. A simple phrase that means a lot to Seth and his family, the staff at McLouth Elementary, and the kids that participate every year. Seriously, focus on the message and not try to nit pick through it for your own sick version. Seth, hope you get to feeling better soon, we miss you!Mrs. V

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sourpuss 6 years, 3 months ago

My prayers are with you, Misty, my dear childhood friend. I am glad you are raising awareness of this disease and I hope for the best for all of you.

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susan32877 6 years, 3 months ago

I am the mother of two boys who had Hunter Syndrome. David died when he was 19, that was 11 years ago. Mike was 24 when he died 2 years ago. "Crazy dress day" is NOT a term that the newspaper nor the school chose to use. It was coined by the National MPS Society http://www.mpssociety.org/content/4058/Casual_Dress_for_MPS/It is Casual dress day for adults, and crazy dress day for our kids and their schoolmates. It is NOT used in a derogitory manor. The kids LOVE the term, and that is all that matter.Hunter's Syndrome is a horrible disorder with no cure. Mike was lucky enough to get into a clinical trial that extended his life by replacing the enzyme he was missing. Please stop focusing on the word "crazy", focus on our boys (only boys get Hunter Syndrome), and on finding a cure for this disorder. Take the time to make a donation to the MPS Society (www.mpssociety.org) and mark it for research. Seth, I hope you feel better soon!!! Misty, I know how difficult this is for Seth, but also for you and your family, my heart is with you.

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gr 6 years, 3 months ago

Let's hear it for the Redskins!

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mps2mom 6 years, 3 months ago

Thank you to those of you that have posted in support and to well.... come to our defense smile. We, Seths parents, are the ones who have labeled this one event every year as "Crazy Dress Day. Come out of your shell for MPS/ML" and I can assure you that there was, at no time, any thought of it implying that the kids should make fun of anyone with mental illness. Honestly, it is sad that all the work and love that we put into making Crazy Dress Day and all consumer1 could get out of it was something negative. That is to bad...but we all had a good time despite my son laying in a hospital bed over an hour away because I knew how important this day was for him, the kids at the school and to raise awareness- thats why it was held on MPS Awreness day. I want to add a public THANK YOU to Mclouth Elementary staff for supporting Seth so much that they allow us to invade every year for this day and for the wonderful way they all treat my son and take care of him while he is under their watch. So please lets just see this event for what it really is...one way a community (school and the journal world) came together to show a very special 9 yr old that no matter what he has to go through his friends and community will be there for him.

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