10-year-old Sarah Murnaghan has remained on the lung transplant list for 18 months.
The fourth grader was diagnosed with cystic fibrosis at just over a year old.
Doctors say Murnaghan could lose all lung functions in weeks. That is unless she persuades the change of a federal rule for the National Lung Board to grant her the next available adult lungs.
"I don't know if we have time to fix this for Sarah," said Janet Murnaghan, mother.
Murnaghan is first on the list for a pediatric lung within 1,000 miles but those lungs are rare.
Her family thought she got a break when she got put on the adult list, usually reserved for ages 12 and up.
"That's when I realized because Sarah is under 12 and she needs adult lungs, those lungs are offered to every adult who matches first, then offered to adults who are much healthier than Sara - any adult who matches. And then they are offered to Sara," said Janet.
Appeals to the National Lung Board to offer Sarah the next available adult lungs were denied.
"I see it as ageism or discrimination. We feel a lobar transplant is just as successful as a pediatric," said Fran Murnaghan, father.
"Under 12 there were like 20 pediatric offers last year and on the adult list there were 1,500 offers, we're talking vastly different numbers," said Janet.
During her stay Murnaghan wrote a song, proving that she's not ready to give up this fight.
"I'm not going for easy, just for possible," she sings.
Meanwhile doctors are appealing to transplant centers outside of the region.
An online petition has also been set up with the hopes of helping Murnaghan be moved up the waiting list.