Cystic fibrosis is an inherited chronic disease that impacts the lungs and digestive system of approximately 30,000 children and adults in the U.S.
Ten-year-old Sarah Murnaghan is seen waving and blowing kiss in a new video following a second lung transplant (watch video below).
Murnaghan, who has end-stage cystic fibrosis, first made national headlines in early June when HHS Secretary Kathleen Sebelius told a House panel that it wasn’t her job to pick and choose who gets access to adult lungs. At the time, Murnaghan had been hospitalized at Children’s Hospital of Philadelphia for three months. Murnaghan’s parents wanted Sebelius to make their daughter eligible to receive a transplant of adult lungs because pediatric lungs rarely become available.
“I can’t imagine anything worse than one individual getting to pick who lives and who dies,” Sebelius told the House panel in June. She didn’t want to give Murnaghan an unfair advantage over other children who were also waiting for lung transplants. “Unfortunately, there are about 40 seriously ill Pennsylvanians over the age of 12 also waiting for a lung transplant.”
According to CBS News, Sarah underwent her first adult double-lung transplant on June 12, but experienced a primary graft failure because of the poor quality of her first set of lungs. The 10-year-old received her second pair of lungs, which were infected with pneumonia, on June 15. CBS News reports that Murnaghan parents approved the operation because their daughter was running out of time.
According to the Cystic Fibrosis Foundation, cystic fibrosis is an inherited chronic disease that impacts the lungs and digestive system of approximately 30,000 children and adults in the U.S. The body generates a thick, sticky mucus that clogs the lungs and causes life-threatening lung infections. The mucus also blocks the pancreas and prevents natural enzymes from helping the body break down and absorb food. Advances in medical technology have extended life for children and adults with cystic fibrosis, but a child with cystic fibrosis wouldn’t have been expected to live past elementary school in the 1950s.
ABC News reports that Sarah’s mom created a Change.org petition that went viral. The petition brought attention to the Under 12 Rule, which said that adult lungs would first be offered to adult matches before they could be given to Sarah.
Fortunately, a federal judge issued a temporary restraining order to block Sebelius from carrying out the Under 12 Rule in Sarah’s case. Less than a week later, the Organ Transplantation and Procurement Network made the decision to create an exception for Sarah and others, based on the details of each particular case.
According to My Fox Philly, this video was posted by Sarah’s mother, Janet Murnaghan, to her Facebook page Thursday with the message, “Happy 4th of July!!!”
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