Baby Needs Life Saving Transplant

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Seth's Story

Seth Benjamin Petreikis was born July 21, 2010. He was born with a heart condition that required open heart surgery at 2 1/2 weeks of age. 3 days after surgery he was diagnosed with a rare, fatal disease called complete DiGeorge Syndrome. Only 5-12 children are born with this yearly. With this syndrome Seth has no T cells and cannot fight off any infection or virus. This condition is fatal by age 2.

Seth is in need of a life saving thymus tissue transplant. The only place those are done is at Duke Hospital in North Carolina under Dr. Louise Markert.

This procedure is not covered by our Medicaid. If successful, Seth's outlook is great. By the time he is 3 he will have a normal immune system.

Everyday is a gift from God especially for Seth.

Our mission is to raise the needed funds for Seth's Thymus Transplant. The procedure will cost between $350,000 and $500,000. If the State of Indiana steps in and will pay, or if money is raised exceeding the amount needed, it will go towards the goal of getting this procedure approved so no child will have to go through this again!

https://www.paypal.com/us/cgi-bin/we...06282818e091d0

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In addition to donations I would think contacting Indiana Medicaid would be very productive and worthwhile. Let's give Seth many Merry Christmases to come. Our multi-million earner MLMers should be honored to help.


Soapboxmom

Indiana infant to get transplant after all

From Mia A. Aquino, CNN
December 10, 2010 10:45 p.m. EST



STORY HIGHLIGHTS

• Medicaid denied coverage for Seth Petreikis' surgery
• Infant will go to Duke in North Carolina next year
• "I am so, so, so grateful," father says

RELATED TOPICS

• Medicaid
• Surgery
• Duke University

(CNN) -- An Indiana infant who was denied a life-saving transplant surgery by Medicaid will now have his operation paid for.

MDwise, Inc. and AmeriHealth Mercy of Indiana announced Friday that they will cover six-month-old Seth Petreikis' thymus tissue transplant after Medicaid denied his parents original claim. Two appeals to the state's Family and Social Service Administration had also been denied. This decision comes after media reports of Seth's plight.

After having an open heart surgery at about 2 ½ weeks, doctors diagnosed Seth with Complete DiGeorge Syndrome, a rare disease that leaves him with no immune system.

Dr. M. Louise Market pioneered the surgery at Duke Hospital in North Carolina -- the only doctor at the only hospital in the United States that performs the surgery. Duke Hospital has done 60 thymus transplants in patients with DiGeorge Syndrome, and approximately 75% of them survived. Without this transplant, Seth would face serious infections that would surely end his life.

Tim and Becky Petreikis from Dyer, Indiana, were told the cost of the surgery would be $350,000 to $500,000 -- a cost they told CNN they could not afford.

Seth's health care is covered by Indiana Medicaid, but this treatment was originally denied because the surgery was considered experimental. Investigational treatments are not covered by Medicaid.

"Based on Seth's unique and compelling story, we believe making a compassionate allowance in this case is appropriate," said Caroline Carney Doebbeling, the MDwise chief medical officer, in a press release.

MDwise chief marketing officer Jamie Bruce told CNN in a telephone interview that instance likes this don't happen often.

"It is a rare thing. We have not had a case this unique before. This is the first instance in the state of Indiana that someone has had this condition," Bruce said.

Bruce said that MDwise came to a decision to cover Seth's transplant mid-day Friday.
Seth's father said that MDWise called his wife Becky directly Friday afternoon and told her that their son's surgery would be covered. Petreikis said she was so happy she just started crying.
"I am so, so, so grateful," he said, adding that he is beyond excited.
"The thing that makes America great is we pull together when others are in need," the father said.

The family set up a website and bank account asking for donations to help them afford Seth's surgery. After only two days, $150,000 was raised. The Petreikises told CNN that because Seth's surgery is covered in full now, all of the money will be going to a foundation to get the procedure deemed non-experimental so that other families and children can be helped.
They added that they are overwhelmed with gratitude and thankful to the state of Indiana.
Seth's father said that Seth will have heart surgery in February to have a shunt replaced. After recovering, he will go to North Carolina where he will hopefully have his thymus transplant by April.

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Such wonderful news. Let's keep that media exposure up for everything that deserves such attention!

Soapboxmom

Our prayers and warm thoughts to this family. Thanks to all those who fought to see he got the benefits he deserved!

Baby Seth dies; he never got potentially life-saving organ transplant

From Mia A. Aquino, CNN
May 26, 2011 2:09 p.m. EDT

http://i.cdn.turner.com/cnn/2011/HEA...reikis.cnn.jpg
Baby Seth Petreikis in his hospital bed.



STORY HIGHLIGHTS

• Baby Seth went to a North Carolina hospital in hope of an organ transplant
• He became the focus of media reports when a Medicaid provider denied coverage
• Coverage was granted, but another complication prevented the surgery
• "He was such a little fighter," his mother says

(CNN) -- A 10-month-old Indiana boy born with a fatal genetic disorder died Sunday at a North Carolina hospital where he had gone in hope of receiving a potentially life-saving organ transplant, his parents said in a Facebook post.
Seth Petreikis, after having open heart surgery when he was about 2 1/2 weeks old, was diagnosed with complete DiGeorge syndrome, a rare disease that left him with no immune system.
However, it was not Seth's heart or the complete DiGeorge syndrome that ultimately caused his death, his mother said in the same Facebook post. Baby Seth died from complications resulting from a problem with his airway.
Seth went to Duke University Hospital to receive a thymus transplant. The procedure was pioneered by Duke's Dr. M. Louise Markert, the only doctor at the only hospital in the United States that performs the surgery.
Seth's condition resulted from the absence of a thymus gland, which produces T cells, a type of white blood cell that helps protect the body from infection, Markert told HLN in a television interview in December.
Without T cells, Seth had no way to fight infections, Markert explained.
Sixty infants with complete DiGeorge syndrome have received transplants and 43, or 72%, survived, according to Duke University Hospital.
But Seth's family hit a roadblock when coverage for the transplant was denied by MDwise, an Indiana Medicaid administrator that was their insurer, because the surgery was considered experimental.
The cost of the surgery was an estimated $500,000, which Seth's parents told CNN they could not afford.
Seth's plight became the focus of many media reports.
MDwise eventually reversed its decision and agreed to cover the transplant.
"Based on Seth's unique and compelling story, we believe making a compassionate allowance in this case is appropriate," said Caroline Carney Doebbeling, MDwise chief medical officer, in a press release issued after the reversal of its decision.
But last week, doctors determined Seth had a severe tracheomalacia, meaning his airway was so floppy it could not sustain itself. Seth would have needed to be on ventilation for years, and he would not have been eligible for the thymus transplant during that time because of the ventilation.
It would have been impossible for Seth to stay free of infections and viruses for those years, Seth's mother, Becky Petreikis, explained on the Facebook page. "Pray for Seth Petreikis."
"He was such a little fighter. It was an honor to be his mom for 10 months," she wrote.
Seth's funeral will be Saturday morning in Crown Point, Indiana.