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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

gr 5 years, 11 months ago

Let's hear it for the Redskins!

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mps2mom 5 years, 11 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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susan32877 5 years, 11 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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angel4dennis 5 years, 11 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 5 years, 11 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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Multidisciplinary 5 years, 11 months ago

Not my personal opinion, I repeat, not my personal opinion, but I am surprised no one jumped to accuse him of being off his meds over this.That's a typical comment made so often on here.

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consumer1 5 years, 11 months ago

Hey Kristen you went to K-State the reason you don't care is because you can't read.

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Kristen Murphy 5 years, 11 months ago

Wow. Seriously - get over it. Nobody cares.

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consumer1 5 years, 11 months ago

I understand, how this particular word is really so socially acceptable in many many uses. I just find it kind of odd, that it was in its original form used to depict those people with limited or abnormal (I know what is normal) behavior in a very negative way. Much like the use of the derogitory names used to depict people of certain origins, I will use the word "Mick" to describe people of Irish descent, since I am from Irish decent, Supposedly it is okay for me to use that word, therefor, is is acceptable for a NON IRISH person to use the word "MICK"?? Or, according to rap music using the "N" word by African American people is "ACCEPTABLE" but, not for NON_AFRICAN AMERICAN PEOPLE to say it. So, I still believe the word "CRAZY" regardless of intent, is slanderous and hurtful to a certain segment of people. If we as a society are going to draw lines about what is acceptable language use and what is not, It has to be in black and white. I should not use the word "MICK" to describe myself whether in song or in an article. It is derogitory and slanderous to Irish people. ie: the N word used in rap music. If anyone is prohibited the use of that word, then everyone should be prohibited from using it regardless of their national origin or skin color. The same with the word "CRAZY". People with cognitive or emotional disabilities are "NOT CRAZY", but in the wrong context, they may still feel singled out or hurt. What I am saying is, if one peson is restricted from using any word, everyone should be restricted there are NO RULES FOR US and different RULES FOR THEM.

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Hug_It_Out 5 years, 11 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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autie 5 years, 11 months ago

and the implication is well taken. Political Correctness sucks when applied in the strict sense. Words are not the bad guy, only the implied meanings..something to be said about context.

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consumer1 5 years, 11 months ago

Yeah yeah yeah. I posted so many times to get this some attention. autie, Rap uses the "N" word all the time, so is it okay for you to use that word?This is just an example of how some of us like to restrict words that others use. Me personally, I know I am "CRAZY as H*LL". but, I think it is interesting that the LJW, uses words that imply negativity or have demeaning meanings. And one dictionary doesn't make the use any less. And so many of us are Held hostage by the "Political Correctness Police" that I thought it important to point this error out...

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autie 5 years, 11 months ago

OK consumer, because I have so much to do today. Dictionary.com has 13 entries for the word CRAZY. Only one of them refers to mental status. The rest are all about impractical, unusual, bizarre, anxious, eager, excited...I must be CRAZY; posting like some of the other definition providers. lol

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autie 5 years, 11 months ago

I say "Ban Patsy Cline". Oh, wait, "Ban Willie Nelson"!! He writes songs with politically incorrect titles. Give me break man. I'm crazy sometimes, so what? At least we all understand the meaning. Crazy as a loon. You can change the name of the flower, but you can't do nothin about the smell. (Andy Griffith)

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KU_Dude 5 years, 11 months ago

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

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blahblahblah 5 years, 11 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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consumer1 5 years, 11 months ago

I know the teachers and students of this school are doing a wonderful thing by celebrating to bring awareness to their fellow student. It is the Journal World I hold in contempt for being so heartless!!

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consumer1 5 years, 11 months ago

This should have been the first blog to have rec'd negative feedback. This is outrageous that the defenders of justice have let this slip by.

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consumer1 5 years, 11 months ago

I figure if I post enough, maybe some of you who like to stand up for diversity and fair play might want to join in.

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consumer1 5 years, 11 months ago

If it is not obvious, I am outraged that is such a politically correct, intellectual city such as Lawrence, that Noone has picked up on this flagrant insult towards the members of our community much less the members or the world whom they have typecast as less than everyone else.

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consumer1 5 years, 11 months ago

I would also suggest the writer of this article not be held responsible alone, but rather the editor who allowed this to go to print.

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consumer1 5 years, 11 months ago

I owuld like the Journal World print a retraction and an appology to the members of our community whom they have offended with this careless journalism.

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consumer1 5 years, 11 months ago

Maybe it's just me, but it is my belief that using the word crazy to describe the bahavior of some one basically is implying "out of the ordinary/different" and to me this is a gross abuse of language. Perptuating the myth that the children in this article are in some way "Disturbed"? Or socially un-acceptable.

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consumer1 5 years, 11 months ago

But, shouldn't an "award winning newspaper" be more considerate of those with challenges?

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consumer1 5 years, 11 months ago

Or, depending upon who is casting aspersions, is it okay to use titles that are derogitory?

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consumer1 5 years, 11 months ago

Just a thought, Isn't using the word "CRAZY" a derogitory term used in the past to describe people who suffer from or are challenged with mental disorders. And should it be used as a "Catch" word for a news paper article in this liberal town where everyone (almost everyone) tries to remove the bigotry and hate? C'Mon Larry Libers The use of this stereotype is outragous!!

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