Such uncertainty gnaws at Morrison and Altmann. “I’m a data-driven person,” he says. “Give me all the data, I’ll analyze it and make a decision.“ But with Fanconi anemia, “there’s not enough data . . . It kind of leaves you feeling utterly helpless.”
That feeling of helplessness hits other areas of life, too. The couple are concerned that the family could be subject to genetic discrimination. Paying for Nina’s care has also brought struggles. While the family had a major medical policy during her birth, the insurer tried to make them pay $40,000 of the nearly $100,000 hospital bill. Morrison spent several months fighting that charge, then tried to find full medical coverage. But no insurer would take on a low-profit patient like Nina. Finally, Morrison suspended his software business to work for Extensis, a Portland software company whose group health policy will enroll a child with a major illness.
The reaction to Nina’s illness among some longtime acquaintances also surprised the couple. When Altmann first emailed a dozen mothers in a playgroup about Nina, only four responded. “I have a friend I have known since I was five,” Altmann says. “She’s never acknowledged anything to me.”
The barrage of problems would make it easy to give in to fatalism, and Altmann and Morrison admit they ride an endless emotional roller coaster. But even at low times, Nina herself inspires love and hope. “The biggest positive we focus on is Nina,” Altmann says. “She is so cheerful, even when she’s sick — joyful, energetic, funny, and phenomenally cute.”
That spirit has inspired friends and strangers to offer everything from kind words to donations. Last summer, the playgroup came through, organizing a “Tiny Tot Trot” walk and lunch to raise funds for research. Altmann and Morrison have met others facing the same illness through an Internet listserve and a camp in Maine for Fanconi families.
“You form a different family, a family you didn’t want to belong to,” says Lynn Frohnmayer. She adds that, in her view, Fanconi patients see their world more with hope than despair. At a recent camp, five teens spoke about their experience. Four of them, she recalls, said they “felt lucky” to have this disease. “They felt they had been forced to view every day as a precious gift.”
Morrison and Altmann may not feel lucky. But Nina’s illness has made them think about life in new ways.
“I have a hard time with an omnipotent deity that makes innocent children suffer,” Morrison says. But, he adds, Nina “touches people spiritually, emotion-ally. Maybe people who aren’t going to live as long as most of us pack the same amount of spiritual connectedness into a shorter time, so it’s more intense.”