The Race To Save Sarah
JANET: Hi, Sarah.</s>SARAH: Hi, mommy.</s>JANET: What you doing?</s>SARAH: Nubby.</s>JANET: Why are you with "Nubby"?</s>SARAH: Because of my</s>CF.  JANET: What does "Nubby" do for you?</s>SARAH: It, like, clears my lungs.</s>JANET: Yes. So you can breathe?</s>SARAH: Yeah.</s>HARLOW: That was 10-year-old Sarah Murnaghan and her mom Janet. And as you saw, Sarah is very sick. She may only have a few weeks left to live. Sarah was born with cystic fibrosis. It clogs her lungs and her digestive system. She needs a new lung. She needs a lung transplant immediately. But as her parents only recently learned, Sarah's age makes that incredibly difficult. Now the Murnaghans are trying to change the rules that govern lung donation for young children, if not in time to help their daughter, then in time to help others like her. Our Zain Asher has their story.</s>SARAH MURNAGHAN (singing): Twinkle, twinkle.</s>ZAIN ASHER, CNN CORRESPONDENT (voice-over): Ten-year-old Sarah Murnaghan wants to be a singer.</s>S. MURNAGHAN (singing): How I wonder what you are.</s>ASHER: Her mother says if she gets a new pair of lungs in the next few weeks, her dreams could one day be a reality.</s>JANET MURNAGHAN, SARAH'S MOTHER: I'm not going to telling her she's dying, because she's 10.</s>ASHER: Sarah was born with cystic fibrosis, an illness that's damaged her lungs beyond repair.</s>S. MURNAGHAN: I used to go to school before. I got a lot to do. Got to go to school and at least try and act like all the normal children.</s>FRAN MURNAGHAN, SARAH'S DAD: We knew at some point she would need new lungs. We had hoped it would be much, much further down the road. But over the years, her disease has progressed.</s>ASHER: If Sarah was 12 years old, she'd have a higher chance of receiving adult lungs. But since she's 10, she primarily has access to children's lungs, which are in shorter supply.</s>J. MURNAGHAN: That's insane. It shouldn't be about their age. If she's the sickest person, she should qualify.</s>ASHER: Under the rules, the only way Sarah could receive an adult lung is if the other patients in her region who are aged 12 and older turned it down first.</s>DR. STUART SWEET, BOARD MEMBER, UNITED NETWORK FOR ORGAN SHARING: It tugs at my heart. It's not a perfect system. There is no perfect system. It's the best we can do right knew.</s>ASHER: Dr. Stuart Sweet is a board member at the United Network for Organ Sharing. He helped write the pediatric transplant rules.</s>SWEET: So if I change the system to give Sarah an advantage, there's another patient, very likely an adolescent, who then gets a disadvantage. And I'm not in a position, and I don't think the system should be in a position to do that on a case-by-case basis. We built a system that we try to be as -- tries to be as fair to everyone as possible.</s>ASHER: With the clock tick on Sarah's life --</s>J. MURNAGHAN: But it's so hard to get pediatric lungs.</s>ASHER: Her mother is still working on a solution. Her options, though, are limited.</s>J. MURNAGHAN: Maybe it's too late for Sarah, I don't know, but it's not -- it's not right. I'm going to fight for the next person's kid.</s>ASHER: Sarah still has hope.</s>S. MURNAGHAN: I'm not going for easy. I'm just going for possible.</s>ASHER: The possibility of living of maybe one day realizing her dreams.</s>ASHER: Zain Asher, CNN, Philadelphia.</s>HARLOW: Well, Sarah's parents are urging transplant officials to change the policy that they believe limits young children's access to adult donor lungs. They have set up a petition for that at change.org. You can search Sarah Murnaghan at the top of the page. Sarah's mom also has a FaceBook page devoted to her daughter's fight for survival. It's at facebook.com/janet.murnaghan. And you can find out more information, learn about these transplant rules at www.unos.org. And at 8:15 Eastern Time this morning, we're going to be joined by Sarah's parents. They're going to talk to us about this fight to save their daughter. And just ahead, we'll take you to a town on the Jersey Shore that is still feeling the effects seven months after Superstorm Sandy. They're feeling it this Memorial Day weekend. Just a few mementos are all that any family has left from the ruins of their homes. We're going to find out what some of them are doing to try to keep the impact of another Sandy of hitting them like this again.