Perched on the edge of her hospital bed, Sarah Murnaghan performs a song she wrote and takes a bow. It's a song about perseverance, with a common refrain of "you can do it, if you try it."
Sarah is one of those 10-year-olds you feel lucky just to meet. But it's not because of her talents as a budding singer-songwriter, even though they are impressive.
It's because of her attitude and her drive for life.
Sarah was born with cystic fibrosis and has been in and out of hospitals her whole life. But it wasn't until February when Sarah and her parents, residents of Newtown Square, Pennsylvania, were forced to start living at Children's Hospital of Philadelphia.
For the past several months, her lungs have deteriorated rapidly -- much faster than her family had expected. Janet Murnaghan said that as it stands, her daughter could have just three to five weeks left to live.
"We knew at some point, she would need new lungs," her father, Fran Murnaghan, said. "We had hoped it would be much further down the road, but the disease has progressed."
Sarah, the oldest of four siblings, is well-aware she's sick -- but not aware of just how sick.
"I'm not going to tell her she's dying, because she's 10," Janet said. "I'm going to tell her we're going to keep fighting."
"I don't want to scare her."
While shooting an iPhone video of her daughter, Janet asks, "When are we getting you back to school?"
"Definitely a couple of months before (I go back) -- maybe even a year."
School is one of the things Sarah misses most about life outside of her new environment.
"I used to go to school before I got oxygen," Sarah says, pausing to wipe away tears as the "puffs" from the oxygen mask toss her bangs. "Got to go to school and at least try and act like all the other normal children."
Life with cystic fibrosis: 'Pretend you're on a boat'
Asked how she would describe living with "CF," Sarah says to "close your eyes and pretend you're on a boat." The boat she describes represents her lungs.
"The water keeps the boat afloat, but sand sinks your boat. And all we got is a little sandy, but we're going to be OK."
"She may feel like she's kind of sinking," mom said in a later interview. "As she said, what you can do ... is kind of brush off the sand, or if you need to get a new boat, kind of start over, which would be a transplant, to get a new set of lungs, so she'd be clean again."
But "brushing off her boat" and getting that transplant has proved difficult.
Sarah's been on the wait list for new lungs for 18 months, and the Murnaghans were under the impression a transplant was imminent. She is, after all, the No. 1 candidate on the priority list for children in her region, which consists of Delaware, District of Columbia, Maryland, New Jersey, Pennsylvania, West Virginia and northern Virginia.
But that's where it gets tricky -- she tops the list for children's lungs -- not adult lungs. For Sarah, a modified adult lung would fit as well.
Two weeks ago, Janet and Fran learned that if Sarah were 12, she'd have a much better chance of receiving adult lungs. But since she is 10, she primarily has access to children's lungs, which are in shorter supply.
"That's insane," mom said. "It shouldn't be about their age. If she's the sickest person, she should qualify."
Few lung transplants for children
In 2012, there were just 10 transplants in Sarah's age group, according to the United Network for Organ Sharing. There were more than 1,700 adult transplants.
According to the rules created by the organ network, the only way Sarah could receive an adult lung is if the other patients in her region who are 12 and older had a chance at it first.