Jan. 6, 2011: Baby Seth's doctor and parents talk about the miraculous progress in the struggle to save his life.
A 10-month-old Indiana boy has died after battling a rare disease for months.
Seth Petreikis passed away Sunday afternoon at the Duke University Medical Center in North Carolina, where he was awaiting a tissue transplant to save his life.
"He was such a little fighter. It was an honor to be his mom for 10 months," said Seth's mother, Becky Petreikis, in a posting on a Facebook Page called "Pray for Seth Petreikis."
Becky Petreikis said doctors discovered Seth had severe tracheomalacia last week. "This means that his airway was so floppy it could not sustain itself," she said.
"We don't know what caused this, or how it happened," Seth's father, Tim Petreikis told NBC Chicago. "It was never diagnosed prior to his symptoms."
This disorder would have forced baby Seth to live on ventilation for years, meaning he couldn't receive the tissue transplant he needed to survive.
Shortly after he was born, Seth was diagnosed with complete DiGeorge Syndrome, a condition that inhibited his body's immune system. Only one doctor in the United States can perform the surgery that could have saved his life.
Seth and his parents experienced several setbacks during the past few months. First, the surgery he needed was denied by the family's insurance carrier because it was deemed "experimental."
A non-profit organization later offered to pay for it, but bureaucracy got in the way of some paperwork, delaying Seth's care.
During the last few weeks, Seth had been struggling to breath on his own. The thymus tissue transplant couldn't happen until Seth was off the breathing tube for two weeks. But on Sunday, baby Seth lost his battle.
"Ironically it was not his heart or the DiGeorge Syndrome that caused his death," wrote his mother.
As of Monday morning, the cause of Seth's death is still unknown.
"After talking with my wife about it, we decided it would be best to let him go here because there were such great memories of that home. Memories that gave him hope. People that reached out in love. I'm so humbled by the people who reached out to help." Tim Petreikis said. "I remember how NBC just picked up the story and completely ran with it to help us and it's just such a sweet memory that my wife and I decided that we didn't want to tarnish any of those memories with him dying there."
"He never said a word, but his story spoke to thousands. He never went to school, yet taught us so much," Becky Petreikis wrote.