Jordan is an energetic 9-year-old who enters a room with a bounce in her step. She likes to write, color and play with her friends. Her face lights up as she sifts through a bin of toys with her younger brother, finding treasures among the cars, trucks and rainbow-colored stuffed frogs, following a check-up at the BMT Clinic at University of Minnesota Medical Center, Fairview.

Her mom, Laurie, delights in this moment of normalcy—a moment she had been waiting for since 1997 when Jordan was diagnosed with Fanconi anemia, a rare, inherited disease that causes bone marrow failure.

Jordan’s family was introduced to the disease by a fever that just wouldn’t come down. A low platelet count and bruising led to further tests that confirmed her diagnosis.

“The first thing I thought was ‘what is it?’ I’m a nurse, and I had never heard of it,” Laurie says of the disease.

After researching Fanconi, Laurie discussed options with Jordan’s doctor. “He said we could treat her so she could have a fuller life or ‘put her in a glass bubble,’ basically do nothing,” protecting her compromised immune system. They chose the former.

At her doctor’s recommendation, in 2001, Jordan came to University of Minnesota Medical Center, home to the world-renown Fanconi Anemia Comprehensive Care Program—the single largest treatment center for FA patients in the United States. Here she received an unrelated donor umbilical cord blood transplant. Fairview-University BMT Services is one of the nation’s largest cord blood transplant programs.

While waiting for the transplant to take was most difficult for the family, Laurie says she appreciated most the care that the nurses and doctors, especially Jordan’s doctor, Margaret MacMillan, M.D., University of Minnesota Physicians. “She’s wonderful,” Laurie says.

Now Jordan is back in school with her friends and has taken up ballet dancing. “We chose to let her live her life,” says Laurie. And she is, every step of the way.