Dressed as Elsa and acting out a scene from the hit Disney movie "Frozen" in her family's living room, Norah Gratz-Lazarus may seem like your average 5-year-old.
"It's confusing because when you look at her, she looks like this totally normal kid. And she's doing all these totally normal things. You don't look at her and think that she has a life-threatening disease," explains her mom, Rachel.
Her progressive hearing loss and stunted growth led doctors to diagnose Norah with Fanconi Anemia, a rare disease that interferes with her body's ability to repair its DNA.
According to the latest medical statistics, just 31 kids are diagnosed with every year in the United States. If untreated, there is a 90 percent chance that Norah will develop leukemia or bone marrow failure.
Since being diagnosed, Norah has had several biopsies and gets blood drawn every few months.
The cure is a bone marrow transplant. But the problem is even after a global search, she doesn't have a match.
"Our fears and anxiety about the future are completely overwhelming," says Zachary, Norah's father.
Gilbert Martinez is with Be The Match, an organization helping the family in their search. But unlike donating blood, finding a match for Fanconi Anemia is much more difficult.
"There are eight different blood types, a universal donor and universal recipient. So it's a little easier to find matches. But when we talk about bone marrow matches, it is incredibly difficult because there are 42 trillion variations of it," says Martinez.
"I want her to go to school. I want her to graduate from high school. I want her to go to college. It's heart-breaking. We love her. It's really hard," says Rachel, as she begins to cry.
But they're not giving up. They have launched a national campaign to get people to become bone marrow donors, hoping to find the one match to save their daughter's life. They have already registered more than 1,600 people towards their goal of 10,000.
The parents say, through it all, Norah has been tough.
"She is so brave, and keep us brave," says her dad.
For the most part, Norah isn't sick. But doctors sas the next few years are crucial since her healthy could change dramatically. And even if they find a match, there is still a long road ahead.
"So if the new immune system doesn't recognize the patient's body, that can cause problems," says one of Norah's doctors, Dr. Kristina Shimano, at UCSF.
Martinez says getting people to become bone marrow donors can be a challenge because of the misconceptions around being a donor.
He says people register online and are then sent a swab kit, which requires potential donors to swab the inside of their cheeks and send it back.
"If you match with someone, we will give you a call to potentially come in to donate," explains Martinez, adding which at that point, it is similar to donating blood.
He adds that there is also a great need for people of color to become donors to help people of similar ethnic backgrounds who are in need.
Often siblings are the best donors, but Norah's younger brother is not a match.
"So, that basically puts us in a place where her life depends on the generosity of strangers," says Rachel. "We know that this is in some ways our way out. That it is the cure."
"And if you're not a match for Norah, maybe you will be a match for someone (else)," says her dad. "What's important is helping save lives."
To learn more about Norah's campaign, go here.
To learn more about becoming a bone marrow donor, go here.