Topic: Benefit For Samantha, seriously ill teenage girl,
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Benefit For Sami Sigel Set
09/13/07
Samantha ``Sami'' Sigel, teenage daughter of Travis and Brenda Sigel, of Warfordsburg, has been seriously ill since February 2006. She has been unable to attend school or participate in any other normal activities of a teenage girl. Sami has always been an excellent student, being very active in the National Junior Honor Society. In addition to her schoolwork, Sami has always excelled in sports, especially basketball. And, like any other teenager, she also enjoyed going to the mall with her sister and friends.
But everything in Sami's life has changed. She has been subjected to every medical test imaginable, from local hospitals to Johns Hopkins and the University of Maryland, but with no diagnosis of Sami's illness. Finally, in January of 2007, Dr. Jones in New Haven, Conn., diagnosed Sami with Lyme disease. Jones has treated more than 8,000 children with Lyme disease, and he has determined that the bacterium have now infected Sami's brain, heart and joints. She has extreme sensitivity to light, joint pain, severe headaches, vomiting, panic attacks, shortness of breath and rib soreness. Concentration is also a problem for her. After reading only one paragraph of text, she has already forgotten what she has read.
Sami has been taking a combination of oral and injectable antibiotics, but Jones has advised that she would be better served if antibiotics could be administered via a PICC(peripherally inserted central catheter) line. Since Jones is not ``within the network'' of participating doctors for the medical insurance provider, Blue Cross/Blue Shield, the expenses would not be covered to insert the PICC line. Even though a ``network'' doctor was located, Dr. Grossberg, who supported Jones' diagnosis and had ordered the insertion of the PICC line, Blue Cross/Blue Shield still denied coverage.
Finally, on August 27, 2007, once more the request for insertion of the PICC line was submitted to Blue Cross/Blue Shield for approval. Having been denied not once but twice, the family had little hope. Much to their surprise, the PICC line insertion was approved this time.
But, the approval notice had also left them to question what portion of the expenses would be covered. Regardless, this was Sami's only hope for recovery. Without delay, on August 28, 2007, the PICC line was inserted at Chambersburg Hospital.
So what does all of this mean? Sami has at last been able to receive the first step in medical treatment that she so desperately needs to get well. Because her condition went undiagnosed for nearly a year, her symptoms have continued to worsen. Sami was 14 when this terrible nightmare began. One can only imagine how painful it has been for her parents to watch helplessly as their daughter's condition has deteriorated during the past 18 months.
Financially, the family's situation has become one of desperation.
Brenda, Sami's mother, has been the primary caretaker, so she, of course, has not been able to work. They have been forced to rely on one income. With all of the costs for the trips to Connecticut (about $1,200 per trip) coming out of their pocket, not to mention all of the other expenses that insurance has not covered, the family really needs help.
Please join in the effort to help Sami and her family through this very difficult ordeal. It's times like this when our community must stand together to help those in need.
In an effort to raise community awareness on Lyme disease, there will be free brochures available, courtesy of the Sigel Family. Their sincere wish is that no other family will have to experience the same heartache.
A benefit basket bingo for Samantha will be held at Southern Fulton High School Sunday, October 7, at 1:00 p.m. Refreshments will be available. Doors open at noon. All baskets are dated from 1989 to 2006 and JW Corn basket and 2000 Founders basket will be two of three raffled. There will also three large Boyds Bears raffled.
Cost of the bingo is $20 for 24 games. For tickets, contact S&M Transport at 717-573-2401; Tana Unger at 717-573-2519; after 4:30 p.m. at 717-294-3438; or Patti Mills at 717-294-3676. Tickets are also available at the door.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Thanks, Sarah. This child and her family live in McConnellsburg PA.
I get so angry when I see stories like this one. People should be able to get the health care needed for their kids and themselves, without having to rely on charity events. How did insurance companies and the people who run them get so twisted?
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
And charity events, though wonderful, only help a little with the financial burden of Lyme.
I pray she gets better and is able to resume an active life!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
UP up UP*_!*)!)!
ANYone in the area, please help*)!!! ANd if you are the member of a philanthropic organization in the area, see if they will help*!!!! Her MOm is on this board and they have been through a rough time- some idiot neurologist treated her with IV steroids-!!!
ANd BINGO is fun*)!*)! If you have never played BINGO, it is GAMBLING()_!(*_(!_! It has a RUSH*! Serously, folks*)!!! Talk your friends into it if you live nearby!!!!!!!!!!!!!!!!!!!!!!!!!!!!
It's only $20 bucks!!!!!!!!!!!!
A benefit basket bingo for Samantha will be held at Southern Fulton High School Sunday, October 7, at 1:00 p.m. Refreshments will be available. Doors open at noon.
Cost of the bingo is $20 for 24 games. For tickets, contact S&M Transport at 717-573-2401; Tana Unger at 717-573-2519; after 4:30 p.m. at 717-294-3438; or Patti Mills at 717-294-3676. Tickets are also available at the door.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
This is very local for us, we will be going! I will be looking forward to meeting this family. My son is 11 and is on his 3rd year of being sick and out of school. Thanks for posting this article!
posted
We are about 6 1/2 hrs from Dr. J. This amt includes office visit, hotel room,gas,food, Igenex blood work. We would not stay but the trip is too long, so we go up the night before the appt. Go to appt and then turn around and come home. Sami is usually wiped out for a whole week. Sunglasses, don't keep all the sun out so she usually rides laying down with a blanket over her head. I called Roche and they do not offer abx anymore. I am seeing some of the brain fog lifting even after only being on IV ceftriaxone for 18 days!!! The joint pain and headaches are worse, maybe herx?
Posts: 41 | From Warfordsburg,PA | Registered: May 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Yes indeed the various costs add up too fast,,,way too fast these days!!
Somebody posted recently of some low cost mix at home IV supplies(roceph)on the board recently,,,might try to search for saame.
Just dont do as I did and let the insurance co. cut me off cold turkey when a bit more would have turned the corner. Beg borrow or steal to get MORE IV's after the insurance denys MORE . Appeal appeal appeal and MAKE them pay!!
There are experts in how to hound them into eventual submission. Search for ANY such info!! maybe somebody can chime in a 'remember' who did what!!
Hope the BEST for you!!remaining--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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My heart goes out to you and your family, especially your daughter. She is lucky to have parents that are taking such proactive steps to ensure that she gets the best treatment possible.
The drive to New Haven, CT can be brutal. The traffic and roadways are the most congested in the nation. We have made this trek every two months for two years now. It should take us 4 hours, however we leave 2-3 hours for traffic problems!!! We allow ourselves 6-7 hours for what should be a 4 hour trip. A very long day for all, I can't even begin to put myself in the shoes of sick child like your daughter.
We hope she continues to take "sometimes small" steps to feeling better. Patience, persistence and prayers!!!!! She will get better!!!
We wish you the best with your fundrasier!!!
Posts: 263 | From Georgia | Registered: Feb 2006
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posted
To Sami and Family: Wow. My heart goes out to you guys and wish I were closer to help. I think it is so great that you do everything you can for your daughter. I really hope the new IV meds can give her relief.
I am Sami's age. I have gone undiagnosed for about 2 or 3 years now. Whatever I have is nothing like Sami's though. I can't imagine if it were. I am able to go to school most of the time and I just continue to push my on everyday. From Sami's perspective, it must be horrible not to be a 'normal' active teen. I am not so 'normal' or active myself.
My friends really don't understand what I go through so they push me alot to do things I can't do. I don't do much but go to school because I get so worn out just doing that. I can relate to the joint pain as well. That's how mine all started several years ago. And it continues to persist. Although, now I am starting to show neurologic signs more.
You are probably thinking I should get a LLMD asap, but the closest one is really far from me, and my parents don't think it is necessary. At least not yet. I am sure the time will come when they will think it is worth it.
I just wanted to say how lucky Sami is to have parents like you guys. And I am so glad she is getting the help she needs. I really hope she can feel better and get back to 'normal'. I know how that is. That's all I want these days.
If Sami ever needs to talk I am here for her. I believe we are the same age, can't remember! But, anways, I am here if she ever needs someone to talk to.
I hope you guys find some relief and Sami can get better. Wishing you all the best!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
To Sami's family: My son also sees Dr.J, and one way to help with the costs for the trip is to stay at the Ronald McDonald House - it is literally 1 city block from his office. We drive up the day before the appointment since the ride wipes out my son.
posted
Thank you all so much for caring and for the information. We will definitely check out the Ronald McDonald House.
Sami is not doing so good. She is having headaches daily again and the anxiety seems worse. We just keep praying that this will all pass.
Posts: 41 | From Warfordsburg,PA | Registered: May 2007
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