10-year-old Sarah Murnaghan Photo by: Facebook.com/Janet.Murnaghan

Irish American girl fighting end-stage Cystic Fibrosis not a priority for transplant under law - VIDEO


10-year-old Sarah Murnaghan Photo by: Facebook.com/Janet.Murnaghan

Sarah Murnaghan, 10, is fighting end-stage Cystic Fibrosis and under current legislation, may not be granted the life-saving gift of an adult lung transplant. Sarah has been on the waiting list for a transplant for a year and a half, and doctors are now saying that she may only have two weeks left to live.

Little Sarah Murnaghan has been in the Children's Hospital of Philadelphia for the past three months. She can no longer attend school as she needs a constant supply of oxygen. Her parents, speaking with CNN, said they knew that Sarah would need new lungs at some point, but didn’t think it would happen so soon.

While Sarah is one of the most severe cases of Cystic Fibrosis, legislation is preventing her from receiving an adult lung transplant immediately. In 2000, the US Supreme Court ruled that organ donations must go by rate of medical necessity rather than wait time. This should be good news for Sarah; however, the ruling only applies to people over the age of 12.

Sarah Murnaghan is only 10 years old, thus barring her from benefiting from the rulings. Should an adult lung become available, Sarah needs to wait until all adult candidates in her region, despite them potentially being not as severely ill as Sarah, pass over on the donation. 

Sarah is a top priority on the pediatric list, but the pediatric donors are far fewer than the adult donors, dramatically reducing the number of lungs Sarah is offered. 

Now, Sarah’s family and friends are rallying for change in hopes of seeing little Sarah get the lung transplant she so desperately needs.

On Thursday May 30, the Philadelphia Inquirer reported that two Pennsylvania Republicans - U.S. Rep. Patrick Meehan and Sen. Pat Toomey - asked the U.S. Department of Health and Human Services to bypass organ allocation rules and help Sarah get a life-saving lung.

In an interview with CNN, little Sarah bravely says, “I’m not going for easy, I’m just going for possible.” 

While making an exception for Sarah Murnaghan to become a priority for a transplant may seem the obvious choice, Dr. Stuart Sweet, a board member at UNOS (United Network for Organ Sharing), admits the system is not perfect.

“It tugs at my heart,” said Dr. Sweet. “It’s not a perfect system, there is no perfect system, it’s the best we can do right now.”

Dr. Sweet went on to explain that should an exception be made for Sarah, it would likely decrease another patient’s, most likely an adolescent’s, chances at receiving a transplant. 

“I’m not in a position, and I don’t think the system should be in a position, to do that in a case by case basis.”

“That’s insane,” said Sarah’s mother later said to CNN of the entire system, “it shouldn’t be about their age. If she’s the sickest person, she should qualify.”

Sarah’s mother added, “Maybe it’s too late for Sarah, I don’t know, but I’m going to fight for the next person’s kid.”

Sarah’s mother said the family may now look to other transplant centers. “Our hope is not to be above anyone else who is sicker, our hope is to let Sarah compete based on how sick she is.”

The Murnaghan family has created a page on Change.org for people to petition the OPTN/UNOS Lung Review Board to make an exceptional ruling as soon as possible for little Sarah Murnaghan, as well as to review the current legislation.

The Murnaghan family is asking people all over the country to consider petitioning to help save little Sarah’s life.

Here, watch the CNN story of Sarah Murnaghan:


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