RAISE AWARENESS IN SCHOOLS
FOR CHILDREN WITH MALODOR CONDITIONS
PLEASE BE A PART OF THIS EMAIL
RAISING AWARENESS CAMPAIGN
You can email from anywhere in the world.
FOR CHILDREN WITH MALODOR CONDITIONS
PLEASE BE A PART OF THIS EMAIL
RAISING AWARENESS CAMPAIGN
You can email from anywhere in the world.
Message from Karen, MEBO Research Public Relations Director, UK
Hi all,
Maybe some of you may already have heard about this tragic story of a child of 8 who has been suspended from school because of her odour condition.
http://www.wjhl.com/story/21847947/2013/04/01/little-girl-suspended-24-times-from-school-for-smelling-bad
I think it is shocking stuff and I think it would be good if our community could come together to support the family and educate Washington's education system about odour conditions.
I intend to send the letter attached via e-mail to the 15 schools in Washington contactable via the following link ; to Karla Kyte (elementary education director), Shannon Bishop (school health supervisor) and Susan Kiernan (public relations), (all contactable via the following link(go to Board of Education page then Quick links then telephone directory) and also the board of education directors (I have listed their e-mails below).
http://www.wcde.org/education/school/school.php?sectiondetailid=22111&&PHPSESSID=ede109aa6da198308750951055c3df59
bbrinkley@eastman.com
ervinmilkman1@aol.com
tag0220@yahoo.com
dlhammond1@centurylink.net
jackleonard@embarqmail.com
clarencem@smamusements.com
williamsmasonry12@gmail.com
silversm@wcde.org
mclainp@embarqmail.com
moorej@wcde.org
moneyj@wcde.org
The gist of my e-mail will be:
As a British primary school teacher and a sufferer of metabolic malodour disorder, I was outraged to read about the case of the eight-year-old child in a Washington school who was suspended because of her pungent odour. Although I realise that the majority of people, including medical professionals, are ignorant about metabolic odour disorders such as Trimethylaminuria (TMAU), I am very disappointed that an educational establishment within a country which claims to be forward-thinking and tolerant of people’s differences, can react in such a damaging and hostile manner towards an innocent family in need of support.
Undoubtedly, the victimised child concerned has an incurable metabolic disorder beyond her control. The actions of the school have:
- shown a complete disregard for the psychological wellbeing of the child and family.
- further increased the mental scarring of the young person having to deal with this socially alienating condition.
- stigmatised the disorder to such a degree that the child and her family will have lost faith in their ability to lead normal lives. (No wonder the poor parents went to the media . They had no choice!)
I would suggest that the school:
- apologise to the family immediately.
- research the disorder on the websites: meboresearch.org, tmau.org.uk., breathandbodyodour.proboards, rareconnect.org
- educate the school population about the disorder and ensure that the child is supported through it.
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UK 
Spain 
6 comments:
Also remember, if you test negative for tmau that does not mean its hygenic there are other conditions we have yet to figure out how to diagnose and name. I ask adults...WHY would anyone CHOSE to be unhygenic and live life this way????????. Do you think psychological issues????? At 8 years old a parent could fill the bubble bath pick out clean clothing and know their child is hygenically clean..if an investigation is needed to prove to adults and teachers that parents are taking care of their young children o.k. but see the children are being taken care of...how dare an adult in authority interigate a young child by the way emotionally stressing the child while tgey do it and then quote the child and form conclusions based on it..she said she does not remember bathing..that is a typical response for a child if their scared and don't know how to answer they respond with I don't know or I forgot..for fear of answering wrong and not knowing how to answer.you work with children in school you should know better.....
When adults interrogate a child they feel scared nervous confused etc, they have limited coping skills etc, they often respond to questions with I forget, I don't know , I don't remember , for fear of answering wrong. Fear of getting in trouble, getting someone else in trouble. Not knowing how to answer because they can't figure the adult or situation out. Not understanding why you are asking or what you will do with the answer they give you etc..
Its simple common sense if you have ever been around scared children..and schools deal with children daily..they should know beter..shame on those adults in authority having control over a confused scared child....
A M E N TO THAT!!!
The scared confused child has no idea what the consequence of their answer will be..what you as an adukt in control will do with their answer..that's why they answer with I don't know. I don't remember. I forgot......it feels like the safest answer for the child...that child should feel safe not interogated....
"The child should feel safe, not interrogated!"
our little sister.we have to explain her parents that she has tmau because they dont know.