The life of a 10-year-old girl is on the line in a battle over federal guidelines.
Though, at the top of the transplant list, rules may prevent the girl from getting the lungs she needs in time to save her life.
Susan Candiotti spoke to her and her mother.
Sara Murnaghan's lungs are getting weaker and weaker.
The 10-year-old with cystic fibrosis is now in intensive care… wise beyond her years, Sarah knows she needs a transplant and is in a battle for her life.
She says, “No! I'm never gonna quit! Nevvvver! Never!”
Sarah's parents also are not quitting. Frustrated because, Friday, the federal government refused to intervene.
Her mother says, “Somebody needs to stand up and say this isn't right. this is a human issue. this isn't politics, this is a human issue.”
Even though Sarah's at the top of the child's transplant list in her region and has been waiting for 18 months, federal guidelines disqualify her for an adult lung until she's 12 unless every other adult on the waiting list turns down a donor lung.
In an e-mail obtained by CNN, Health and Human Services Secretary Kathleen Sebelius told Sarah's parents she's not authorized to intervene but is ordering a transplant policy review, adding, quote, “I know this is not the answer you were hoping to receive. My prayers are with you.”
“She says, 'oh, I'm so sorry. I know this isn't what you wanted to hear.' It is in her legal authority. We are gonna let a kid die over red tape?”
It's a battle Sarah shares with other children.
Comparing her lungs diseased with CF to a boat filling with sand.
“Close your eyes and pretend that you're on a boat.” “But sand sinks your boat.” “…but we're gonna be ok.”
Tell me what you think her chances are now, given that the secretary did not step in.
“If you directly donate your loved ones lungs to Sarah, the law cannot change that, and Sarah will use them and create a positive, wonderful life and legacy for your loved one.”
“I'm praying that somebody sees this story as is in a position to save my baby.”
For now, she says life is all about possibilities.