posted on November 9, 2002 01:50:13 PM new
Hi All,
Thanks for taking the time to read this, and for the ones that help out "" THANK YOU "" !!!!!!!!!!!!!!!
Sorry this is so LONG, but wanted to be sure to share the correct info with you.
I would like to ask a huge favor from all of you. {going out on a limb here, but pretty much, I don't know where else to turn too}
I would like to ask, If you all would take a few min's of your time, and email/talk with ALL of your Friends, Family,doctors, and All of your past, present, and furture ebay buyers, or any one you know with a email address., And ask them to do the same thing.{to pass it along}
As many of you know, My son scott age 8 died this last summer from a amoeba.
In the email to send, This is something that is perventable.........
PAM is difficult to diagnose, that is why they say it is so rare, but I am finding out that it is NOT that rare, 95% of the cases are found out by doing a autopsy, if a autopsy is not done, then how many cases have gone unreported or undetected.
IN the last 2 years the number of reportable cases in the USA have been, 11 in Texas, 4 in florida, 2 in Arizona {just this past october 02}, there may be more, but I think that is alot of kids dieing in 2 yrs, with something they say is so RARE.This is a NATIONAL and INTERNATIONAL PROBLEM. !!!!!!!!
primary amoebic meningoencephalitis.{ PAM } Also known as Naegleria fowleri,which is deadly.that causes symptoms of meningitis, the swelling of the membranes surrounding the brain and spinal cord, and encephalitis, the swelling of the brain.
Some of the 1st Symptoms are Vomiting; headache; drowsiness; low grade / high temperature; , Then you get to hallucinating ; pale, blotchy skin color, super high temperature, and then seizures; then death.
You get this by being in any type/ form of water.WATER can be, fresh, brackish, swimming pools ={in some cases}, water foutains, that can be played in, {we have several here in florida}, retention ponds, lakes, ponds, canels, rivers.
The key here is that the amoeba becomes active when the water temp. reaches 80' or higher.....It is always there.....
Most likely the water goes up the nose, and the amoeba lives in the water, which then goes to the brain.
This is a silent killer that the health dept nor the CDC in atlanta wants to inform or educate the public about,{ they don't have to by law, as it is not contagious and they feel that way also, as it is so rare }I say WRONG !!! The only time to hear about it, is when a death has happened from it.
"You're always asking for a dangerous situation when you go into freshwater, especially during prolonged warm periods," Duma said. "Mother Nature has all kinds of things out there just waiting to attack and unfortunately, some of those things are very deadly."
I am very happy to report tho, that the health dept, and the parks dept in my area, "brevard County" will NOW be posting warning signs at 5 of the 7 lakes here.Why not all of them ??? I don't know. ... It only took them more then 22 yrs and the death of MY SON, to make the decion to put signs up. At least they are doing it tho. I also have a warning letter that will be sent home every year, threw the Brevard County schools, with each child, for the parents. I am working on a letter to go statewide in florida, so that EVERY CHILD gets one sent home with. I am also working on getting a law passed, so the health dept does have to make this public knowledge and to give warnings to everyone concerning this.{ that is taking awhile tho, I'm not giving up tho}
I also am believing to get on a NYC news station ABC, NBC, CBS, to get the word out nationally. If any one can help with this, that would be great !!!!.So far, I'M not getting a responce.
Thanks for taking the time to read this and again THANK YOU for all of your help and for the emails you send out to inform and making a difference. It has not been easy, but knowing that people like you care, make all the difference in the world. I still have days, when I can't make any sence of this. WHY ???
You guys are the BEST !!!!! Thank you Terrilee
P.S. sorry for the spelling typo's. quickdraw29, this thread is for you.
[ edited by wrightsracing on Dec 8, 2002 01:20 PM ]
[ edited by wrightsracing on Feb 9, 2003 09:03 AM ]
[ edited by wrightsracing on Feb 9, 2003 10:10 AM ]
[ edited by wrightsracing on Mar 11, 2003 09:45 PM ]
posted on November 9, 2002 02:20:53 PM new
Hi wrightsracing,
I remember the story... In fact, I still have links to a couple of news articles about your son that are still available on the internet... if you want them posted, let me know.
There is no excuse for failure to display warning signs about the health hazard associated with swimming in lakes.
posted on November 9, 2002 02:40:15 PM new
Terrilee ,That big mountain You are having to climb,May have big bucks behind it.
Lot of States don't want to scare off tourist.The internet is probley the only source for you to get your message out,If enough people get envolved on the internet,A news storey will get out.Have you tried Foxs news? O'Reilly factor? This may be the best time to get the message out,pre Iraqi war.
Nothing else taking over the news.
posted on November 9, 2002 03:31:24 PM new
Hi Terrilee, you are doing such a great job of making these changes and getting the word out. It's a wonderful way to honor your son, and I know it must be very difficult at times.
Junquemama that is an excellent idea! I think O'Reily would be very interested in this horrendous situation. There is no reason more parents must go though what you and the other parents have faced by losing a child. No more children should suffer and die, because of lack of information.
posted on November 9, 2002 07:21:16 PM new
wrightsracing, you need a web page!With some pictures of your son.Also an email address for the web page,,for any questions or new news.Also swap web site click ons(no cost)/Doctor or drug store site,Or kids clotheing site.Wish I knew how to help you get started.Maybe someone will come in and help.Have You posted to the other chat rooms?
posted on November 9, 2002 08:47:07 PM new
Hi wrightsracing,
When you last posted I posted some stats rather late on PAM and said I didn't think it seemed as rare as the CDC and others say. Rare is one death every few years, not four a year. Did you see the posting?
I did wonder too whether a tourist state has anything to do with lack of information for its citizens.
I just looked back over your letter and it looks like you either read my posting or found the same things.
You might want to get a family friend or relative who is a lawyer to write a letter that will not libel Gatorland, but get the
information you want. I have come up against
some really nasty companies in my research.
I am going to email a relative who has little kids and a very public job and she will let others know too. Thank you for caring to inform others. aposter
posted on November 9, 2002 09:01:05 PM new
wrightsracing,
I'm very sorry to hear about your loss. I've read about incidences of this infection before but understood that it was very rare. I commend your efforts to bring more information to light.
posted on November 10, 2002 08:04:58 AM new
junquemama
Thanks for the tip on O'Reilly factor, My husban loves him, and he is so bold with honesty, that this is what it needs and is going to take, to wake up the whole lot of health dept's in every area , as well as the CDC in atlanta. I will give it a shot and let you know how I make out.
My local news stations {out of orlando fl} have all put this on the news, the story of my son, and the 12 yr old, who both died on the same day.but because I didn't know at the time of my son's death what he died from, until I got the autospy report back, they did have 2 stories about this amoeba this last summer. 1 station did a follow up story with the signs being posted at the lakes, and 2 stations want to do another story with what I am doing to get the word out and preventing another child from dieing of this.
I don't like getting on TV, but if it is another way to keep bringng awareness of this to the public, then I will keep doing it as often as I can. Some times hearing of this is not enough, some have to hear it several times, to get the light bulb to go off in there heads.
It has been on the news here often, and in the local papers often to, in the last few months, like I said tho, some people just don't get it,..... when I thought my son died by swimming in the lake, I would go and check the lake every weekend to see if any one was there swimming, for the longest time, NO ONE WAS I was so relieved, people listened to the reports. Then here about a month ago, I went and checked, and there were 4 older kids in swimming, It was still very warm here, high 80's -low 90's everyday, and the water temp was above 80's. I went over to the mother and asked if she heard of the boy that died from the amoeba, she said "yes", "but I thought it was in the other lake" , I told her, it was this lake, she got her kids out in a hurry then I explained to her about the amoeba, ....her 1st question was where are the warning signs ??I told her they are working on the wording of them. {she thanked me for coming forward and saying something to her}
http://www.floridatoday.com/!NEWSROOM/localstoryA32768A.htm warning signs posted at area lakes
I also have emailed several news stations in florida, and 2 stations in maimi did run stories this last weekend about the facts of this amoeba and the story of my son and the boy in orlando. The one that did my story ABC, said she told the station in NYC about this, and I told her to keep trying, as I haven't heard a word from them.
I don't have a web site for my son, but here are 2 that do, you can check them out.
http://www.jacobbarrett.com
this site is the same child that died the same day as my son did. We are working together to bring awareness to the public.
AW is the only chat/ message board I look at, if some one wants to share some more chat boards and or, post this info at other chat sites, please go right ahead.The more the better.
aposter
will you please email me at [email protected],I'd like to pick your brain if I can. thanks.
Thank you all again for your support and your caring words.Your the best. Terrilee
[ edited by wrightsracing on Nov 10, 2002 08:08 AM ]
[ edited by wrightsracing on Nov 10, 2002 08:10 AM ]
posted on November 14, 2002 08:25:25 AM new
The 2 boys that died in arizona,this past oct 02. they believe they got it from the drinking water.here is the link to several stories of this.
posted on November 14, 2002 09:51:33 AM new
Terrilee,This url is none working,Do you have another? I am real concerned about our drinking water.I drink distilled,have so since 1975.
[ edited by junquemama on Nov 14, 2002 09:52 AM ]
