This is a prayer Request I've submitted to my prayer chain that I help my friend Charity with. Please keep us in your prayers if your a believer, and if your not a believer, then just realise that these things go on everyday in our public school systems and can not be tollerated. If this can happen to my child it can also happen to yours. Also, it is a plea to you, that when you come across someone in life that may be a little different than you may be used to, don't shun them because of it or treat them differently, rather love them for who they are, they have a lot to offer. And please, please teach your children these same values. Thank you all and may God Bless you richly.
PS. Please send this out to everyone on your list, hopefully if we can get this out and around, then just maybe we can stop things like this from happening. Maybe not completly, but hopefully, we can reduce it and prevent many others with what I prefer to call limitations, from having to go through the same humiliating experience.
Name: Karen Carey
E-Mail address (optional): email@example.com
Prayer Request: Hello prayer warriors, this is a rather lengthy request, but it's the only way to get you to understand the situation.
My daughter, my self, and my Mother has a hereditary skin disorder called Epi Dermalytic Hyperkeratosis EHK for short. This skin condition has many times been refered to as fish skin or reptile skin due to the appearance of it and the texture of it.
Some of the Charicteristics of it is Severe dry skin, skin abrasions are very easily obtained from simply brusing up against something that is harsh such as a wall or really just about anything, we get frequent skin infections, blistering, extremly low tollerence to heat. But another part of it is a social stigma due to not only the appearence of it but the fact that it has an odor that accompanies it. This odor is NOT caused from poor hygine, it is caused from layers of bacteria built up under the many layers of skin. You see, everyone has Keratin in their body which is what produces the skin cells, there is also another gene in there that slows down that production of Keratin, we do not have that other gene, therefore we have an over abundance of skin production and it doesnt' slough off fast enough to keep up with the growth rate, causing bacteria from dead skin cells to be built up under the layers and layers of skin therefore causing an odor.
Ever since my daughter was old enough to talk I have educated her on this skin problem. She is capable of giving the best Dermatologist a run for their money when it comes to this skin problem, and has been able to do so since age five. Well when she started school, she requested of her teachers to allow her to get up infront of the class, introduce herself, explain her skin prob, then open herself up to questions, with the beliefe that if she educated them on it and answered any questions that may be concerning them it would eleviate their fears and therefore, reduce the amount of hateful remarks. This has for the most part worked rather well.
Well two yrs ago my daughter entered into the Jr. High level and when she requested to do that, was denied that right. I have supplied them with as much information that is available out there without going into the technical aspects of it too much, i've also supplied letters from Doctors concerning the odor and how it can't be helped. Very rently my daughter 14 has on three occasions been sent home from school because they said the odor was intollerable, imagine how it would feel to have a child who is physically disabled call you up in tears telling you that they are being sent home because of that physical limitation. It broke my heart. I could see if it were caused from her not wanting to take care of herself, but this is not the case. She bathes daily, washes her clothing everynight rather they need washing or not just so they will smell clean when she goes to school, has put fregrances in the vasaline we have to use from head to toe hoping it will help the odor some, changed her deodorant, soap and shampoo. She has tried everything imaginable to try and prevent this from happening to no avail. She has been sent to the office to sit the rest of the day out because of the odor.
They are trying to tell me that one child is disrupting 600 students. Basically the whole student body. It's difficult enough for a teen ager entering into this age, especially for a girl with all the pressures, now she is having this humiliation added to it. Cindie, is a very loving and caring child, I hate the thought of turning her into a bitter adult by peoples foolishness and ignorance. I have done everything possible to try and work with them yet they just seem to be uncaring.
They have not taken the initative to even read up on the information i've supplied to them with the hopes that if they did, and a student approached them or a parent approached them with concerns they could then deal with the situation appropriatly. But they have chose not to even read the material i've given them. She cannot go back to school until we have a meeting i was asked to attend this next Wednesday, at that time i guess I will find out what they perpose to do about this problem.
I have contacted all the news channels as well as the local newspaper concerning this and they are wanting to speak with me about it. I am not doing that to be ugly, but rather in an attempt to educate the public on this and try to come to an agreement that will be satisfatory to us all. Something must be done to resolve this, they are not willing to work with me so I have no choice but to do this. If they can do this to my daughter then who's to say that next time they won't try to prevent a blind student from education because there are stairs to climb and he could get hurt.
Please be in prayer with me that all will work out for the good of all and that justice will prevail over this matter. The same thing happened to me at her age, but my mother was too frightened to fight the school system. I'm not. My daughter has to know that she doens't have to accept this kind of treatment from anyone and she does have rights to an education. I'm so sorry about this being so long, but it was the only way to explain it all to you.
Thank you all so much for your prayers. If you know anyone with a form of Ichtyosis or would just like to learn more about it, you may do so by visiting http://www.ichtyosis.com
It has a great deal of information there.
Your sister in Christ,
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God bless you all and LOVE In Jesus our LORD!,
Charity and Holly and Karen
Charity's Website : http://www.charity.faithweb.com
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