This week a federal judge gave Delaware County native Sarah Murnaghan's case some breathing room with a temporary court order.
It's a step in the right direction for Murnaghan and countless other children including an11-year-old boy with the same disease.
"He's afraid to go to sleep at night, he's afraid he won't wake up," said Millie Martinez.
Each day of life is a blessing but also a struggle for 11-year-old Javier Acosta of Bronx, New York.
He's been at Children's Hospital of Philadelphia for two months as his battle with cystic fibrosis intensifies and he awaits a lung transplant.
"Simply put, if Javier does not receive a lung transplant, he will die," said Martinez.
Martinez says time is not on her son's side but a temporary federal court ruling is.
On Wednesday a judge ruled that Acosta and Murnaghan, a fellow CHOP patient also in dire need of a lung transplant, are temporarily exempt from a policy that does not allow children under the age of 12 to be placed on the adult transplant list.
For the next 10 days only Murnaghan and Acosta can be considered for adult lungs based on the severity of their case.
"If there is an adult in need of a lung, based on severity then the adult will get the lung. We're not asking to jump to the front of the line," said Steve Harvey, attorney.
"I'm excited about this, it gives my son a chance - a fighting chance," said Martinez.
Even better news, on Monday a move could be made to extend their 10 day exemption while also helping all children in their rare situation.
A national transplant network will vote to decide if the pediatric transplant policy should be tossed aside while more research is done on the issue.
It's a ruling that could've saved the life of Acosta's brother Javon back in 2009.
"His brother was 11 and passed away waiting," said Martinez.
If Monday night's ruling puts the pediatric stipulation aside it will be a major win for these families whose children could get a second chance to live.