PA Parents Fighting to Get Sick Daughter on Adult Transplant List

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St. Louis (CNN) — The parents of a 10-year-old Pennsylvania girl waiting for a lung transplant say they have formally asked U.S. Health and Human Services Secretary Kathleen Sebelius to change rules that keep children under 12 from being prioritized for donated adult organs.

Sarah Murnaghan, who has had cystic fibrosis since birth, could die within weeks without a transplant. She has been waiting 18 months for another pair of lungs as her ability to breathe has rapidly deteriorated. Adult lungs are far more available than lungs from children, and doctors believe modified adult lungs might save the girl’s life.

“We have sent a letter to Secretary Sebelius, stating for her why this is in the scope of her ability to change this law for all of the children rather than let her wait and die,” Janet Murnaghan told CNN’s “Starting Point” Monday.

Sarah is at the top of the list for any pediatric lungs that may become available for transplant in her six-state region.

She could only get available adult lungs if everyone else waiting for lungs in her region — no matter how sick they are — turns them down.

Sebelius has previously told the family that she doesn’t have the authority to intervene in a particular case, but she also has called on officials to review the nation’s lung transplant policy for children.

Any change could take up to two years.

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