The story of a 10-year-old girl who might only have weeks to live, who if she were only two years older would be at the top of the list for a potentially life-saving lung transplant, has gone viral.
The parents of Sarah Murnaghan from Newtown Square, Pennsylvania, who has end-stage cystic fibrosis and has been unable to leave Children's Hospital of Philadelphia (CHOP) for three months, needing a ventilator to breathe, have been fighting for organ transplant policies to change in order to try and get the lungs their daughter desperately needs.
Her mother, Janet, said her daughter has only a matter of weeks to live.
And why wouldn't they fight for it? Speaking with TheBlaze, Karen Weigner, a Pennsylvania mother of a 16-year-old with cystic fibrosis who served several years ago on an advisory board at CHOP with Janet Murnaghan, said she would do the same.
"This is just the life of a CF parent. You are constantly fighting for your kid. It's in the blood of us," Weigner, 39, said. "Who wouldn't do anything for their kids?"
"I hate what the Murnaghans are going through," Weigner continued, "but this is the face of CF. This is what we fight for everyday."
Cystic fibrosis is a genetic disease that causes progressive damage to the respiratory system. In the United States, the disease impacts 1 in 2,500 to 3,500 Caucasian newborns and is less common in other ethnic groups, according to the NIH. The life-expectancy of a patient with cystic fibrosis is into the mid-30s or 40s.
Janet Murnaghan said Sarah has been awaiting a transplant from a pediatric donor and is also eligible for a lung from an adult donor. Under a policy instituted in 2005, organ allocation policies are supposed to be based on severity of illness rather than the amount of time on the waiting list, but that approach only applies to patients over the age of 12. Sarah is a top priority on the pediatric list, but officials say there are far fewer pediatric donors due to improved treatment.
(Photo: Janet Murnaghan/Facebook)
Her parents say the severity of Sarah's illness would normally make her the highest priority for an adult lung, but all adults in the region with her blood type will be offered the lungs first, even those more stable and with less severe conditions.
The family appealed the organ transplant rule but was declined and have since started an online petition, which has more than 89,000 signatures, to HHS Secretary Kathleen Sebelius and John Roberts, president of the Organ Procurement Transplant Network/United Network for Organ Sharing Board of Directors, to change this policy. The petition reads:
Please reconsider the policy that excludes children under 12 from receiving adult lungs based on medical necessity. And we implore you to start by making an immediate exception for 10-year-old Sarah Murnaghan, who has been on the lung transplant waiting list for 18 months. UNOS policy requires adult lungs to be offered first to adults in less dire need than Sarah. Please treat her life as equal to an adult's life. She doesn't have much more time and needs new lungs now. Please give her the chance to receive the adult lungs she needs to save her life.
(Image: WTXF-TV video screenshot)
"We don't want preferential treatment for Sarah, we want equal treatment," Janet Murnaghan said Sunday to the Associated Press. "We want it to be a triage system like they do for everyone else where the sickest patient goes first and ones with ability to wait, wait."
Dr. Stuart Sweet, director of the pediatric lung transplant program at Washington University School of Medicine in St. Louis, who helped draw up the pediatric lung allocation guidelines, told the AP a prioritization system wasn't set up for children younger than 12 because of a lack of data to set up proper statistical models, and an "apples-to-apples" comparison of relative illness between the two groups wasn't possible.
"Each time we direct a set of organs to a given patient, because there's a limited supply, that reduces the likelihood that another patient will get that organ and survive to transplant," he said.
(Image: WTXF-TV video screenshot)
"The policy is designed to be fair to everyone, and we can't make exceptions on a case-by-case basis beyond the exceptions that are built into the policy to cover circumstances where the patient's not being served well," Sweet said.
The Murnaghan family is currently appealing directly to an adult transplant center.
Speaking with Fox affiliate WTXF-TV earlier this week, the 10-year-old expressed her own hopes.
"I'm not going for easy. I'm just going for possible," Sarah Murnaghan said from the hospital.
"I want to be famous and be on stage and sing and dance, and play my xylophone," WTXF-TV reported the girl singing.
Watch WTXF-TV's report:
Although her own daughter Rebekah has not been faced with as serious of a condition with her own cystic fibrosis, Weigner said they realize they don't know what the future holds for her. Sarah's story has helped Weigner reinforce to her own daughter the importance of doing her daily treatments and of living in the moment.
The Weigner family last 4th of July. Rebekah is the one wearing navy. (Photo: Karen Weigner)
For the world, Weigner said Sarah's story is "something that shows a need for change."
"Maybe this is something that can change a life," she said.
Although the Murnaghan's have expressed that they won't give up fighting for their daughter, Weigner said they understand the severity of the situation.
"They know they might lose Sarah, but they want to make a difference," Weigner said.
The Associated Press contributed to this report.