( CNN ) -- The parents of a 10-year-old Pennsylvania girl who 's been waiting more than a year for a lung transplant says the girl has essentially been `` left to die . '' 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 . She is at the top of the list for any pediatric lungs that may become available for transplant in her six-state region . Doctors say modified adult lungs could help save her , and adult lungs become available much more often . But children under age 12 are n't prioritized for adult organs , under federal rules . So Sarah could only get available adult lungs if everyone else waiting for lungs in her region -- no matter how sick they are -- turns them down . U.S. Health and Human Services Secretary Kathleen Sebelius has called on officials to review the nation 's lung transplant policy for children , but any change could take up to two years . Organ donation by the numbers . A statement from Fran and Janet Murnaghan welcomed the policy review as a `` positive step . '' `` However , Sarah , and other children like her who need a transplant now , do not have the luxury of time to wait for a lengthy bureaucratic change , '' the parents said . `` Essentially , Sarah has been left to die . '' The department said Sunday it is sympathetic to the many parents facing similar circumstances . `` Our heart goes out to any family that is dealing with a loved one who is on a waiting list for an organ transplant , '' the statement said . `` Given the significant disparity in the number of transplantable organs to the number of people in need of an organ , ( the Organ Procurement and Transplantation Network ) has regulations and policies to ensure that decisions are based on the best medical science and the most equitable process in a very difficult situation . '' The Murnaghans asked that other parents consider naming Sarah as a transplant recipient should they or one of their children face death in the coming weeks . `` If you want to directly donate your loved one 's lungs to Sarah , the law can not change that . And Sarah will use that and create a positive and wonderful life and legacy for your loved one , '' Janet Murnaghan told CNN . `` I 'm praying that somebody sees this story and is in a position to save my baby . '' Sarah had a setback Sunday night , suffering from a fever and increased carbon dioxide levels , according to a post on Janet Murnaghan 's Facebook page . `` I am feeling anxious and praying , '' she wrote . The United Network for Organ Sharing , a nonprofit that manages the nation 's transplant system under federal contract , agreed to the review Friday , the same day Sebelius sent an urgent request for it to look at its policy , UNOS spokeswoman Anne Paschke said . But because the review process involves research and public comment , which take time , and because there are not enough organ donations for children , the nation 's transplant system may not be able to save Sarah 's life . Her family wants Sebelius to step in . `` We are going to let a kid die over red tape . Somebody needs to stand up that this is n't right , this is a human issue . This is n't politics , this is a human issue , '' Janet Murnaghan said . Paschke urged more Americans to look at an organ donation website . Sebelius ' request to the Organ Procurement and Transplantation Network called on officials to look at the age categories used in lung transplant cases . Sarah 's struggle has ignited a fight for new rules governing organ donations . She 's been in a Philadelphia hospital for months due to her cystic fibrosis . Tens of thousands of people have signed a petition on Change.org , and a congressman has called on the Obama administration to take quick action . Sarah 's mother told CNN she was `` shocked '' when she learned the rules a couple of weeks ago . Sebelius asked for the policy review in a letter to Dr. John Roberts , board president of OPTN . Sebelius cited the significant disparity between the number of transplantable organs and the number of people in need of an organ , especially among children . She also directed HHS 's Health Resources and Services Administration Division of Transplantation to consider new approaches for promoting pediatric and adolescent organ donation . `` With 1,819 pediatric patients on organ transplant waitlists and only 852 pediatric organ transplant donors each year , it is especially clear that we can and should , if possible , do more to encourage the public to become registered organ donors , '' Sebelius wrote . OPTN issued a statement last week noting that there is a separate policy for children because the `` biological needs and circumstances of candidates younger than age 12 are different from either adolescent or adult candidates . One key difference is the size and lung capacity of donors and patients among these age ranges . '' Children younger than age 12 are prioritized for donations from other children of similar age and size within a 1,000-mile radius . Policies allow `` status adjustments for specifically defined groups of candidates with unique medical circumstances not addressed by the overall policy , '' the statement said . The network routinely reviews policies and considers `` public input as well as medical data and experience , '' the statement said . Dying girl 's plight sparks fight over organ transplants . CNN 's Jen Bixler , Chris Welch , Ross Levitt and Josh Levs contributed to this report .
` ` I ' m praying that somebody sees this ... and is in a position to save my baby , '' mom says . Federal agency says policy aims to be fair in difficult situations . Officials will have several years to review the transplant procedure . Sarah Murnaghan has been waiting for a transplant for 18 months .