Sweet Caroline

Prayers needed for a sweet little 3 year old - Caroline. She is battling Lemierres and was in a drug induced comma in Fleming Island, FL! I know my brother is watching over her and her Dr's right now!

Caroline we are all praying for you! xoxoxoxoxo

http://www.caringbridge.org/visit/carolinekneisley/journal

Looks like she is doing a little better today.

Lemierre's was on HOUSE!!!!

I can not believe I missed it. Now that I have 4 VERY active kids I never get to sit and watch TV. I learned from Stephanie Dean that Lemierre's was shown on House tonight!!! I am super excited but super bummed that I missed it.
You can watch episodes that are 8 days old on their website so it looks like next Tues I will be watching House on my computer!! I remember when we emailed them asking to add Lemierre's to their story line because it is such a strange unknown about disease!
I believe it is the episode called "Confessions" I do not think he ends up having Lemierre's but atleast it is mentioned!

xoxoxox
Tammy

Happy 21st Birthday!

Happy 21st birthday little brother!
I hope you celebrated big in Heaven today! Kristiana was blowing you kisses while we were at your grave site. Cruz said he remembers wrestling with you and I told him so do I. Except I remember getting mad at you for getting the boys all hyped up. Kristiana yells at me "MOM do not get mad at my Uncle Justin! He loves you and you should love him too an be happy, not mad at him!" ha-ahaha-aha
I told her I do love you, I love you and miss you very much, but I did get so frustrated with you when you made Allen and Cruz all hyper. ;0)
They love you and miss you as much as I do. They say they talk to you and they hope you hear them.
Antonio is my mini Justin. I hope he doesn't give me as much trouble as you did mom and dad. ;0)
Justin the Bee we love you and miss you.
I'm sure your embarrassed hearing that nick name.
Love your oldest sister,
Tammy

Snow Camp infant lives with rare disease | snow, camp, disease - Burlington Times News

Snow Camp infant lives with rare disease snow, camp, disease - Burlington Times News

4 month old baby with Lemierre's

I received this article today via email! Crazy!!! Poor little guy! Makes me a little sad that his Dr. told his mom and dad not to look the disease up online because it would scare them. I'm so glad he is doing better. Sounds like he has a ways to go before he is 100% fully recovered. He defiantly has my prayers! Love, Tammy

Libraries

I just created a letter to mail out to all Hospital Libraries in the US. I found a website this afternoon with every address for Hospital Libraries all over the US. I will start printing the letters and get it out to them asap. Letters that go to these Hospitals my not get into the hands of Doctors but it will help teach the Public more about this disease and it will help family and friends of those that have already been diagnosed with it and teach them what lies ahead and that there is hope.
I hope all is well with everyone! Thank you for your continued support.

Love,
Tammy

Mystery Diagnosis Reminder

Tomorrow is the day!!! I can't wait to see Michael and his family on TV!

I am so happy they chose them to do the show about. Michael has been through so much! He is such a strong young man and I hope one day I get the opportunity to meet him and his wonderful family!

Lemierre's will be featured on Mystery Diagnosis Wed. evening 8/7c. I hope everyone gets a chance to watch!!! If not you can always visit their site

www.health.discovery.com/tv/mistery-diagnosis/

We will be having our watching party here at our house. As Justin's niece Kristiana says, "Mommy, you got my popcorns?" ;0)



I have had so many families reach out to us and tell us their story and how grateful they are to our site and all we do. THANK YOU!!! I love hearing that we are making a difference! I have started researching CME departments. They will be my next contact. From what I know they are the ones that hold educational classes and lectures and keep the Dr's up to date on all information!

So you better believe they need a letter form us!

love to all,

Tammy

Lemierre's on Mystery Diagnosis

I just received word from Sherrill (Michael's mom)~
The taping they did on Michael and his long battle with Lemierre's will air on Mystery Diagnosis on Wed. Jan. 26th! This will be their 4th episode of the new year! Their show will be aired on "OWN" Oprah's new network!
TO see what channel it is in your area or on your TV go to www.oprah.com/own/channel_finder.html

Mystery Diagnosis
Wed 8/7c

This is very exciting! I hope everyone gets to watch it!
Love to all
Tammy Valencia

Singapore

This just posted out of Singapore:
SINGAPORE: If you have a sore throat, coupled with neck pain, giddiness and a fever that doesn't go away, you should see a doctor immediately. You may be suffering from the "Lemierre's syndrome" which is rare and potentially lethal.Experts said, there have been fewer than 10 such cases in Singapore over the past 10 years. But this month alone, two cases have been reported.One of the patients was 32-year-old Vincent Leo.He thought it was just the flu when he had a sore throat and fever two weeks ago. But when he did not get better, he saw a doctor and found out that he had Lemierre's."I kept vomiting and having diarrhoea at night. My left side of my face swelled up a little too. It was even painful to eat and drink," said Mr Leo.Dr Jagadesan Raghuram, Chief and Senior Consultant of the Department of Respiratory Medicine with Changi General Hospital, said: "The common bacteria that we have in our oral cavity usually causes this disease...some of these bacteria for one reason or another becomes pathogenic, meaning they invade, and become a cause of the disease."What it does is the bacteria, apart from causing local problems like gum disease or local cavities...it can actually spread through the tissues in the oral cavity into the neck...the bacteria that causes this infection actually causes inflammation in the surrounding vessels of the neck."And the bacteria can actually seep to other organs like the lung, liver, kidneys, spleen. And if the infection is not controlled or treated aggressively, upfront, this can cause organ failure and death."Dr Raghuram said the disease affects young adults between 20 and 40 years old. Treatment includes a four-week course of antibiotics. For the first two weeks, the patient needs to take the antibiotic intravenously in hospital followed by another two weeks orally. Antibiotic treatment can be stretched to six weeks where needed.He added that patients are also treated with blood-thinners for three to six months because the disease usually involves blood clots in the veins. Dr Raghuram said medical records show that only one patient here has died from the disease. He said the rare disease occurs in about only one in every 1.25 million people.

Happy Thanksgiving!

What I am thankful for..... I know I am very thankful for all the love, support and prays from people that have never even met us in the past 2 years. I'm thankful for all of the young adults that have done or will do research papers on this disease in their classes. As well as for all the people helping us spread the word of this disease and helping us teach Dr's by asking their Dr. if they have ever heard of it. I'm thankful for all of the people that stop me or any other member of my family or firends and ask them what Lemierre's is. I'm thankful for my 4 beautiful, healthy & amazing kids. I'm thankful for my family and friends especially for my husband who supports me in everything I do. I am very thankful for the relationship I have with my mother, father, sister and brother as well as the rest of my family. I am soo thankful I got to share 17 great years with my little brother, even though we all wish it were longer and we miss him so much. I'm grateful that he lives on through my children, they remind me so much of him.
I know we have taught hundreds if not thousands of people about this disease and there are still hundreds of thousands more! If anyone reading this is on facebook look us up we are on there as well. Share our link and become our friend. Help us pass the word of this disease. I still read articles from reporters and people saying how rare this disease is. When you look into it and read all of our comments on this page as well as our other site www.lemierresyndrome.com you'll see how untrue that really is. This disease use to be rare. It is making a huge come back in our world.
I am especially thankful to everyone that reads or follows this blog and shares it with everyone they know.
Much Love,
Tammy

This sat!!

Paintball Fundraiser is this Sat!!

I just went and bought all the food!
it's 11:30 - 3:00 (games start at 12)
must be at least 10 yr old to play. If under 18 you must either have a parent with you or a notarized waiver ( I have one I can email to you)

$20 includes all your equipment, a t shirt, lunch, drinks and a $5.00 off coupon to pasta house!
Now that's a deal!
Come hang out with us even if your not into paintball!
The Crux
(Wellspring Wesleyan Church)
2396 Highway A
Washington MO, 63090

Food available for those not paintballing at a CHEAP price!
Suppose to rain a little but don't let that stop you from coming out!

Happy Birthday Soilder Boy!!

Happy 20th Birthday Justin!!
I had another dream about you the other day!! I was so excited to see you and you didn't understand why? I just kept hugging you and I wouldn't let go! You were so embarrassed! It's weird because the dreams I have of other people it is them but it's either not their face or I can only see from the chest down. In the 3 dreams I've had about you or that you've come to visit me in it has been your face and every detail about you has been right. But every time I wake up for about 5 min I'm so happy I got to see you again but then I realize how mean that was!!! I get to see you for a few moments and then you're gone! Today on the way home I was changing stations on the radio and I heard this song that caught my ear. It was so pretty (I know you don't like pretty songs) it was all about what that person would want if they died to soon. It was actually a very strange song but it made me think of you and some how it made me feel like I was meant to hear it today at that exact moment! The name of the song is "If I Die Young" by The Band Perry. I know you're here everyday with us. Antonio was outside today (it was a absolutely beautiful day) and he kept looking up at the sky like he saw something I thought maybe it was a bird but honestly nothing was there. I've always heard that babies and small kids see things we don't. I swear when he stare at the ceiling or into my eyes I look soo hard to see if I see your reflection! Cruz has a lot of your facial expressions and definitely your attitude. Allen was so excited to get your guitar for his birthday. He really misses you! We all do! Kristiana is such a smart pretty little girl she knows exactly who you are! I told Allen and Cruz that have to tell Antonio and her all about you when they get older!I hope you had a great birthday in Heaven today!
Love you,
Tammy (your older yet shorter sister!)

How about a game of Paintball!?!?!?

We are going to try a new type of fundraiser!
Something I know my little brother would enjoy if he were still here with us!
Something that all his friends will enjoy and we can all afford!
Something that any age can participate in and have a blast!

Saturday Oct. 23rd is going to be our first Paintball Tournament!

It will be held at the paintball fields at
The Crux in Washington MO,
(which is the same location as Wellspring Wesleyan Church park in their parking lot & walk behind the building)
2396 Highway A
This is about 25 min. from Eureka

Time is 11:30-3pm

There will be food & drinks available, all paintball participates will receive lunch at no extra cost, all others will be able to purchase food for a small price. Drinks will be provided for everyone with no charge.

The minimum age to play is 10, if you are under 18 you MUST have a waiver filled out and signed by your parent or guardian in order to participate. If your parents will not be with you the waiver MUST be notarized or you will not be able to play!!! This is a very strict rule there is no getting around it. Email Tammy @ sunflwz2@yahoo.com and she will send you the waiver to have filled out. If your parent will be with you there is no need to fill one out ahead of time we will have them there.

Invite ANYONE you like!!!
Go to http://www.facebook.com/#!/event.php?eid=151559128209396&ref=ts
YOU MUST BE LOGGED INTO FACEBOOK BEFORE YOU CAN GO TO THAT PAGE.
and let us know if you will be able to attend, if you click on "Select guests to invite" on that page you can invite everyone from you friends group to come as well!!
We need to make sure we have enough food for everyone so please RSVP, ASAP! The paintball field can only hold up to 60 people so RSVP NOW! I already have 10 people saying they will play. You can RSVP by emailing Tammy or doing so on the facebook page for this event.

I took my 11 year old son here a few weeks ago & all the paint came out of his shirt in the wash! Here is what they say about what to wear and what everyone will get.
"Participants may bring their own paintball guns and/or mask, but for safety reasons everyone must use our paintballs. Please encourage everyone to wear shoes with long socks and long pants. Long sleeve shirts or sweatshirts are also encouraged but not required. We have masks, chest/back protectors, and neck protectors available at no additional cost. The rental guns we provide are Tippman 98s."

It hurts when you get hit by these so come prepared!

So how much does this cost? I'm sure your asking...
It is $20 per person and that includes
*3 hours of play
*500 paintballs
*A Mask
*Gun
*Chest & back protector
*Lunch
*Drinks
*$5.00 off coupon to Pasta House
*And a Lemierre's T shirt with my brother's pretty little face on it!! ;0)

Please get ahold of us and let us know if you plan on coming!! You can also comment on this post and let me know as well.
Alcohol is not allowed at this event!
Below are the rules of the facility, we must follow them remember they are helping us to raise money for our cause and letting us use their items!!!

Thank you!!
Tammy Valencia

General rules
1. All participants must be registered with a signed liability waiver. For participants under age 18, liability waivers must be signed by a legal guardian.
2. Children age 10 and under must be accompanied by an adult at all times
3. The Crux is not responsible for participants’ lost, stolen, or damaged personal property – keep up with your stuff.
4. No Fighting – (we prosecute fighting)
5. No Verbal Abuse including, but not limited to: profanity, name-calling, or racial, ethnic, and/or religious slurs will be tolerated under any circumstances.
6. No weapons allowed on property
7. No illegal drugs or alcohol allowed on the property. (we prosecute illegal drug possession) Anyone using or under the influence of alcohol or any other substance will be ejected from the property. Repeat violators will be banned from the facility permanently.
8. Smoking is only allowed in designated areas – (main porch and parking lot)


Paintball
1. SAFETY GOGGLES must be worn by anyone in the playing field and target range at all times. Only Goggles meeting ASTM guidelines for
paintball with full-face and ear protection are allowed. Modifications are strictly prohibited. Neck and chest guards are provided at no charge
and recommended.
2. NO SHOOTING in any areas other than the designated playing field and/or target range. No shooting into or out of the registration area,
neutral zones, or parking area or at houses, or automobiles. Markers may only be discharged on the active field of play or target range. DO
NOT SHOOT OVER OR AROUND THE NET!
3. NO BLIND SHOOTING
4. ALL JUDGE’S DECISIONS ARE FINAL. Players or spectators will not be allowed to argue with the referees under any circumstances.
5. BARREL BLOCKING DEVICES must be used at all times in every area of the property other than the designated playing field and target
range. Barrel blocking devices must be specifically designed and manufactured for paintball markers.
6. NO CLIMBING on trees, vehicles, or any structure 4’ or higher.
7. NO PHYSICAL CONTACT between players or with judging officials.
8. NO CONSTRUCTION OF BOOBY TRAPS
9. NO UNAUTHORIZED EQUIPMENT or potentially dangerous gear is allowed. All firearms, knives, machetes, paint mines, etc. are strictly
prohibited. The field operator must approve all equipment prior to use.
10. PROPERTY & EQUIPMENT MODIFICATIONS ARE PROHIBITED. Players are not allowed to modify safety goggles, rental markers,
bunkers, or any property on the premises.
11. SPECTATORS are required to wear safety goggles unless they remain a minimum of five feet behind the safety netting at all times. No
exceptions.
12. TANK-FILLS players are not allowed to perform tank-fills (no exceptions).
13. LEAVE WILDLIFE ALONE do not shoot at, handle, or in any way harass wildlife.
14. VELOCITY SETTINGS ARE STRICTLY ENFORCED all velocity settings must remain at or below 260 (fps)

Exciting stuff going on!!

There are some exciting things going on in the life of Lemierre's Awareness!!!

About a month ago I received an email from the casting producer for "Mystery Diagnosis." They are very interested in producing a show on Lemierre's!!! And then Thursday I received a email from Dr. Centor saying the Study has been approved!!!



The University of Alabama at Birmingham is conducting a study of Lemierre’s Syndrome focusing on the duration of symptoms prior to hospitalization, length of stay, and cost of care. If you are 15 or older and have a history of Lemierre’s or are the parent of someone with a history of Lemierre’s please click here to participate.
Study entry process - http://www.medrants.com/lemierre-study/study-entry-process
For a preview of the consent form: http://www.medrants.com/lemierre-study/consent-form
For a brief description of the study - http://www.medrants.com/lemierre-study

Fundraiser in Romeoville IL

I have added a flyer to the side of this website to announce a fundraiser taking place in Romeoville IL to help out Chris (CJ) Schwarz. Please check it out and if you live in that area stop by to help them raise some money for their hospital bills. They are also going to send us a portion of the profits of this fundraiser! Here is what the flyer says!

Have You Ever Heard of Lemierre’s Syndrome?
Neither had any of us…
The friends and family of Chris (CJ) Schwarz are holding a Benefit/Fundraiser to help with extraordinary medical costs incurred from his battle with this disease.

We have also chosen to donate a portion of all proceeds from this event to the Justin E Rodgers Foundation. The family of Justin, who was 17 at the time he lost his life to this disease, has created a foundation dedicated to providing information on Lemierre’s to medical and health professionals and facilities as well as the general public, so that
other lives may be saved

Chris (CJ) Schwarz (proud new uncle!)
Chris is a 19 year old former graduate of Romeoville High, he was an RHS Madrigal singer, and a dancer with the Bolingbrook Park District Danceforce for years. He was athletic and healthy when he was diagnosed with a strep throat in February. Within a few days, he was in the hospital ICU and diagnosed with Lemierre’s Syndrome which had already spread to his lungs. After a week long stay, he is currently home under continuing medical care and slowly recovering.
Lemierre’s Syndrome is a rare disease, that is becoming more prevalent. It affects young healthy individuals, generally in their teens and twenties. It is a very fast-moving bacterial infection, that can cause permanent organ damage and death if not diagnosed in time. It can require long-term treatment; and pain and fatigue may continue long after it has been brought under control.

Please come out and help, and get more information on this potential killer.
Enjoy the music of “Junior Terrace Blues Band”. Food will be provided, there will be a cash bar, and we’ll have raffles and drawings to enter. Hope to see you there, and Thank you for your support!

Sunday, May 23RD

Leo’s Bar & Grill

201 E. Romeo Road, Romeoville, IL
1PM - 5PM

Private donations will also be accepted at any Harris Bank location under
Christopher J. Schwarz/ Lemierre Syndrome Fund
Tickets will be available at the door for $15.00 Under the age of 21 - $10.00
Contact Sue Leonard - 815-886-2257 or E-mail: SUEL321@hotmail.com for more information.
You may also purchase tickets ahead of time with the above information.
A very special Thanks to the doctors, nurses and staff at Bolingbrook Adventist Hospital.
Your wonderful care and compassion are greatly appreciated!