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Tuesday, March 24, 2009

Since my last post

Well it has been over 1 month since I last posted here. We have so much going on it's hard to keep up with everything. Hopefully in the next couple weeks our website lemierresyndrome.com will be up and running. It will have lots of information about Lemierre's and what we are doing to help teach the public. I will still post events and updates here on our blog site.



Justin would have been a senior this year at Eureka Senior High in MO. Prom is just around the corner and we have decided to throw a Remembrance Dinner / Prom to remember Justin and help get out awareness of this disease that took him from us. If you would be interested in going please send me your mailing address so I can send you a invitation.
Sunflwz2@yahoo.com is the email address to send it to.

We will also be holding the first Lemierre's Walk sometime in late May or early June. More information will be posted on these 2 events as the Days become closer.

I have found many people effected by this disease on Facebook and Myspace. All I did was search the word Lemierre within these 2 websites and many people popped up. On Face book there was even a support group called "Tears for Lemierre's" and a few groups Saying please pray for ..... they are in the hospital with Lemierre's. Just about everyone of those people on Facebook and Myspace all said the same thing.... "I came down with a rare disease", "the Dr's say it's so rare.." OR " leave it to me to come down with this rare disease" I wish these people would really see how rare it really is not.

We are still working on our very first project in teaching Dr's about this disease. Or getting them to want to learn more about it. I'm in the middle of pricing out the items we want to send these Dr's. We will first begin with Infectious Disease Dr's then go from there. Our first priority is getting our website up and running.

I am also going to be ordering short sleeve T shirts here in the next couple weeks. If you or your family are interested please email me and let me know sizes and I will add you to our list.
Sunflwz2@yahoo.com

THANK YOU FOR YOUR SUPPORT!
Love,
Tammy

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Justin's news article in the West Magazine

This was taken from http://www.westnewsmagazine.com/news02.html

Rockwood student dies rapidly from little-known disease
By Diane Plattner

In April, Eureka High School student Justin Rodgers began to complain of a severe sore throat and was dead approximately one month later from an unfamiliar disease. Now, his mother hopes to spread awareness about the deadly disease.
Justin died in the early morning hours of May 12, the day after Mother’s Day, after losing a battle with Lemierre’s Syndrome, a serious bacteria that is not well-known and even doctors are prone to misdiagnose the disease. Unfortunately, Rodgers’ doctor was among that group after initially diagnosing him with strep throat on April 11, said Sheryl Rodgers, Justin’s mother.
“Justin had said, ‘Mom, this is the worst sore throat I’ve ever had in my life,’” Rodgers said.
She said that Justin’s doctor took no throat culture and gave her son medicine for strep throat. She said her son’s condition worsened over the next few days during which he had increased high fever, chest pain and a lump in his neck. On April 14, Rodgers took her son to St. Anthony’s Hospital, which transported him overnight to Cardinal Glennon Children’s Hospital where he underwent extensive testing, including X-rays and blood work, Rodgers said.
Rodgers said that hospital officials diagnosed him with Lemierre’s Syndrome, a bacteria that can surface after mouth trauma. Last July, Justin was in a car accident that resulted in mouth injuries that required him to get major dental work, including a recent new tooth. In addition, Justin had suffered a broken nose just before the onset of his sore throat, his mother said.
“I wonder if all this woke up the bacteria, which was already living in the body,” Rodgers said.
The last time Rodgers saw him fully awake was a few days later, when hospital officials decided to place her son on a respirator and sedate him with drugs.
“He was out of it but still with us then,” Rodgers said. “He would frown when the doctors worked on him. So he had some responses.”
However, Justin’s lungs kept collapsing, prompting hospital doctors by April 25 to place him on an ECMO machine to help rest his lungs and heart. Doctors at that point also put him into an induced coma, Rodgers said.
“At that point there was no response from Justin,” Rodgers said. “Still, I talked to him and rubbed his sore spots to let him know we were there.”
By Mother’s Day, Justin was leaking too much blood, prompting doctors to decide to remove him from the ECMO, a move they said was risky if his lungs were not healed enough.
“Once they took him off the ECMO, Justin’s face was getting gray,” Rodgers said. “He was holding his own for a few hours, but then he starting going downhill.”
Justin died early the next morning following Mother’s Day with his immediate family, including three older siblings, by his side, Rodgers said.
“He was our baby,” Rodgers said. “I think the hospital tried to keep him going so he did not die on Mother’s Day.”
The tragedy is not the first for the Rodgers family. They also lost a 4-year-old child in a horseback riding accident and had a stillborn child many years ago, Rodgers said.
“I thought God could not possibly do this to us again,” Rodgers said. “I asked why again, why us. But there is no answer. Here we are walking on egg shells again.”
Rodgers said she was at least thankful that Justin’s funeral was so big that people were standing outside, a huge tribute to his life. She also hopes to honor his life with a campaign to help spread awareness about Lemierre’s Syndrome, which she said often hits people between the ages of 14 and 25. It is not spread by kissing but instead lives in the body, she said. Her goal is to make people, including doctors, more aware of its symptoms so they are not mistaken for strep throat.
“I do not want Justin to have died in vain,” Rodgers said. “This is one bad bacteria. It is very serious. People should not treat it lightly.”
To learn more about Lemierre’s Syndrome, visit the Rodgers’ family Web site at lemierresyndromejrodgers.blogspot.com.