Her fight has sparked national attention and debate. Monday, the local girl who needs a lung transplant to stay alive got a visit from the senator who has championed her cause. He said her condition is dire.
Sarah Murnaghan is a 10 year-old Delaware Co. girl who may have only weeks to live.
"She's currently a very sick child," said Sen. Pat Toomey, R - Pennsylvania. "She's been intubated; she's heavily sedated."
Toomey visited the girl at Children's Hospital of Philadelphia Monday morning. After the senator and others got involved last week, a judge ordered Murnaghan onto the adult lung transplant list.
The senator insisted the issue is bigger than one girl.
"We have a broader problem here, and that is, a flawed policy that systematically excludes children under the age of 12 from participating in the lung transplants that they need to survive," he said.
Since then, a second CHOP patient, 11 year-old Javier Acosta, has also won a court order to get on the adult list. Medical ethicists worry the kids are cutting the line.
"The worst of all worlds, in my mind, is to have some individual pick and choose who lives and who dies," said U.S. Health and Human Services Secretary Kathleen Sebelius, who refused to intervene until a judge ordered her to last Wednesday.
But Toomey said the age cut-off is arbitrary.
"Sarah is being treated by some of the best doctors in the world and they are convinced that she's an excellent candidate to have a successful transplant surgery," he insisted.
Right now, 219 people are waiting for lungs in the Mid-Atlantic region, according to the transplant registry. Of those, 14 are children.
Currently, children under 12 can qualify for an adult lung, but only if it's rejected by older patients -- even those who aren't as sick.
"I don't want Sarah in front of anyone who's sicker," said Janet Murnaghan, Sarah's mother. "This should be the sickest person first.
Even if a child qualifies for an adult, generally it must be resized. Doctors have mixed opinions about the safety of the procedure.
The group that oversees organ transplants is meeting Monday about the "under-12" rule. The judge in Murnaghan's case has scheduled another hearing for this Friday.