DURHAM, N.C. | Seth Petreikis, a Dyer infant who received national attention for his pursuit of a thymus transplant, died Sunday night at Duke University Medical center.
"He was such a little fighter. It was an honor to be his mom for 10 months," said his mother, Becky Petreikis, in an online posting.
In the same post, Becky said last week a doctor looked at his airway and discovered Seth has severe tracheomalacia, or a weakness in the walls of the windpipe that make the walls more limp than they should be.
Becky said the tracheomalacia meant Seth would live for years on ventilation, which means he could not be eligible for a thymus transplant. Seth needed to be off ventilation for the transplant to occur.
Seth was born with complete DiGeorge syndrome, a disease that left him without an immune system. Seth was covered by Medicaid, but the thymus transplant was not covered by the state-federal insurance program. Indiana deemed it experimental.
The family learned in December it was out of appeals, and without the surgery Seth would not live past 2 years old. The only doctor in the U.S. who performs the procedure is based at Duke in Durham, N.C. After Seth's situation received national attention, MDwise Hoosier Alliance said it would pay for the procedure and will determine payment with Duke.
In February, the family learned the negotiation of payment between MDwise and Duke hadn't been completed, and the family lost its place in line for the surgery. The doctor who performs the procedure takes only one patient at a time.
Neither the complete DiGeorge syndrome, nor a heart condition that required surgery in January, caused his death. The cause was not revealed Sunday.
Becky declined immediate comment.
"He never said a word, but his story spoke to thousands. He never went to school, yet taught us so much," his mother wrote. "He will be missed by many, but especially by Mommy, Daddy, and (his sister) Julia. We love him more than words can say. Godspeed, little man."