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Indiana Baby Dies Awaiting Transplant Surgery

DURHAM, N.C. (CBS) -- A Dyer, Ind., infant whose fight to get a potentially life-saving transplant received national attention has died after doctors discovered a new medical condition while he was awaiting surgery.

Seth Petreikis, who was about 10 months old, suffered a rare illness called DiGeorge Syndrome, which could make even catching a cold a serious health emergency.

He had a heart condition and no natural immune system because he was born without a thymus, which would teach his cells to fight. Visitors must wear masks and gloves.

He had been awaiting surgery for a thymus transplant when doctors discovered last week that he also was suffering from a severe tracheomalacia – a weakness of the windpipe that would require Seth to be on a ventilator.

But Seth needed to be off a ventilator to get the transplant. And without the transplant, he would have been unable to ward off infections while living on a ventilator.

Seth died Sunday at Duke University Medical Center in Durham, N.C., where he had been awaiting the transplant.

"He was such a little fighter. It was an honor to be his mom for 10 months," his mother said in a posting on a Facebook page dedicated to Seth. "He never said a word, but his story spoke to thousands. He never went to school, yet taught us so much."

"He will be missed by many, but especially by Mommy, Daddy, and Julia. We love him more than words can say," his mother added. "Godspeed, little man."

Seth was covered by Medicaid, but initially his family's Medicaid provider refused to pay for the transplant, deeming it experimental. In December, the family learned the Medicaid provider had a change of heart and would pay for the procedure.

But, according to the Times of Northwest Indiana, the family lost its place in line for the transplant in February because the payment had not been completed and the doctor who performs the surgery takes only one patient at a time.

According to Seth's mother, neither the DiGeorge syndrome, nor his heart condition caused his death.

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