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Friday, August 22, 2008

Lots of Hits

We have had lots and lots of new people to our website in the last 3 days!!! Over 500 just in the last 3 days!!! We have had over 2,000 in 2 months!
We decided on a name for our nonprofit, Justin E. Rodgers Foundation for Lemierre's Awareness!!!! Our lawyer is working on all the paperwork now.
I have had 4 cases of Lemierre's emailed to me this week that have all occurred over the summer!!! The emails just keep coming from people who have been effected by this disease. And all the stories sound so much a like. Everyone at the end of their email always asks if there is anything they can do to help. I really appreciate that. The only thing I can say in return to that is request a flyer and maybe put it up around your home town. OR Fwd it in a email to everyone in your address book. That's about all we can do right now is talk about it to people and pass the word around more. If you don't know very much about Lemierre's just take the person you are talking to to our website. Once we get our Nonprofit up and going I will be asking for Volunteer's all over the U.S. and then some. I will actually have a website where you can sign up to volunteer. You don't have to be here in St. Louis to help.

Thank you so much to everyone that has helped us get the word out!!!
luv,
Tammy
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Friday, August 15, 2008

New York Times

We have just found out it will be the Sept 14th issue of the New York Times our story will be in. There will be an article on Justin and his Lemierre's Battle. The Author's name is Lisa Sanders and it looks like she has been writing about Diagnoses for at least 7 + years. I do not think they will name Justin as the patient but the important thing is millions of readers will now be more informed on Lemierre's!!!!

I received a packet of info from the State's Attorney General Office on starting a Nonprofit Organization and I have printed out a bunch of info from the Internet too. So my family and I will get together this weekend and start brain storming. First thing first we need to come up with a name. If anyone has any ideas you can email me. I like having Lemierre's in the name so people know what we are fighting but then again I would love to have Justin's name in there too because he is the reason we are fighting SOOO hard! We have lots of work cut out for us but it will be totally worth it!!! I have looked and looked and have not found anyone trying to bring awareness to this disease through a nonprofit. So that is just what we are going to do. We will have fundraisers and all sorts of things going on to promote the awareness of this disease that hurts many many people and families. I don't want to just target it hurting teens because I have heard of 30 - 40 year olds getting it as well. Look at what Dr. Robert Centor wrote on his website this morning! "Finally we had an epidemiologic study which defined the extent of this disease. I have extrapolated the Danish data to the United States. Assuming the same incidence, I estimate that we have approximately 1000 patients with Lemierre’s yearly and 100 deaths. I would put the confidence range of these estimates at 50% greater or less than this estimate." So everyone sitting back thinking this won't happen to me or my kids will not be effected from this or Dr.'s thinking "nah that's not what my patient has" is not going to fly anymore. This thing is getting bigger and bigger and more and more people are being effected as the months go by. Just a few years ago they were saying 120 cases in 100 years now it is 1,000 in 1 year!! We need to start getting scared and making sure if it does happen we (including our Dr.'s) are well educated and it is take care of right away! That's why I am going to put my heart and soul into these awareness efforts!
If you have never been on Dr. Centor's blog site you should check it out! www.medrants.com

Thank you again and go get the NY Times Sept 14th!
Luv,
Tammy
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Saturday, August 9, 2008

Happy Birthday Jamie!!!

Today is my brother Jamie's birthday! We are actually getting mom and dad to go out with us tonight! I can't wait to show Jamie what I made him! I'll tell you all about it in a couple days. I don't want to ruin the surprise! LOL
We had 102 people at the website yesterday!!!!! Another big day!!!
Keep forwarding those emails and the flyers. I have had a few requests for the flyer so please if you don't receive one contact me and I can send it to you. Sunflwz2@yahoo.com It should be real easy to open it is in a word document, it even has Justin's picture on it!!! So people can put a face with the name!
I've had so many people that I know over hear other people they don't know talking about Justin all this promotion is really working!
Someday we will all be able to make sense of this and we will know exactly what our plan on earth was. When Justin signed my wedding picture he put "I wish you many happy years and I will always be with you." And that was exactly to the day 1 year before he passed away. My little brother was taken from us on my 1 year wedding anniversary but I don't mind sharing that day with him. They are both days I WILL NEVER forget! I will always miss and love him but I know I'll see him again and at that time I will thank him for writing that for me and waiting for me the night he passed away!
We love you Justin!! And I promise you we are going to fight this horrible disease with all of our strength!

luv,
Tammy
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Friday, August 8, 2008

WOW!!!

The response from the emails have been amazing to say the least!! We have had over 300 people visit our site in 3 days!!! Usually we have anywhere from 10 - 40 people visit a day, yesterday we had 108!!!! Justin is really becoming famous!!
My family and I would love to hear the progress on the 2 in OH and the one in NC that currently have the disease! If you could please email me, sunflwz2@yahoo.com . I know some don't like to share details but we just want to make sure these teens are ok. I was forwarded a great Power point presentation describing a lot of different things about Lemierre's. It's just amazing. From what I gathered from this presentation is that 10% or more sore throats have this bacteria that causes LS. Its when the people are not given the correct antibiotics when Lemierre's starts to develop. I think there are other ways our children are getting this disease but we just are not made aware of it yet.
Every week I get an email or a comment to this website of another patient that currently has or had Lemierre's in the last couple months. If this keeps up that means I will get at least 52 - 104 cases emailed to me each year. And the old research shows 120 cases in 100 years. Justin's website is PROOF they are WRONG saying 120 in 100 years.

Thank you!

Tammy
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Wednesday, August 6, 2008

Flyer

One of my family members created a flyer promoting Justin's website and Lemierre"s awareness. I emailed it to everyone in my address book and put this message in the body of the email.
"Hi there! One of my family members created this flyer to pass around to everyone we know. Please open it up, print it and pass it around to everyone you know. Also forward this email onto everyone in your address book. I promise we can save lives! I have had 25 cases of lemierres emailed to me in the last 3 months and I now know of 4 teenagers that did not survive. All of the ones who have survived have some sort of breathing problem now or other major problems. This disease attacks young healthy adolescence ages 13 - 24. It literally attacks their organs and shuts them down. I had a Dr call me the other day about a case and I really feel like the knowledge Justin's website is provided him has saved his patients life! Please pass this on this is not a chain letter this is not a joke. I will be printing this flyer out and putting it in my children's school and placing it everywhere I can Dr's offices, teacher's lounges, dentist offices everywhere! We will soon be doing News interviews and who knows we may end up on Oprah! ;0)
All I'm asking is you click on forward and add everyone in your address book then click on send! It will maybe take a total of 5 min.. If you don't wanna do it for the lives you could save do it for my little brother who's life was cut way too short at the age of 17! This disease took him away from my mom, dad, my sister, my brother myself and my 3 kids.

Thank you!

Luv,
Tammy"

If you would like me to send you this flyer please send an email to: sunflwz2@yahoo.com

We had 87 hits on this website yesterday and I believe it was due to the emails we all sent and forwarded on. THANK YOU!
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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.