reed magazine logowinter2006

One in Three Hundred Sixty Thousand

 

nina family image
Benjamin, age 9, Rachel, Nina and Tyler live on a former farm near the Columbia Gorge in Corbett, Oregon.

 

 

At two-and-a-half, Nina does look different. She’s slight and knee-high, with glasses and a shuffle to her walk, all features of her illness. But her personality is what steals the show. She is cheerful, outgoing, and direct, bustling around the family’s cozy wooden home telling mom when to make toast, asking dad to hold her upside down or take her upstairs to play a little foosball.

The family lives on a broad, windy hilltop above the Columbia Gorge in Corbett, Oregon. Toys flank the piano and books line shelves built into the ogive roof. Morrison, a software engineer, installed a solar-electric system to power his computers. He began installing a wind generator as well, but the turbine has spent two years in a box, a project delayed—like the half-built front porch railing—by the demands of Nina’s illness.

“You don’t have the energy and emotional resources for a lot of things you did,” Morrison says.

Coming out of Reed, the duo took a typically atypical path to this home.

Morrison grew up in Hawaii, where his mother worked for social service agencies. His father was a musician, artist, and architect who used traditional tools to restore an old hotel on the slopes of Kilauea into the Volcano Art Center. Morrison worked alongside. At Reed he took a passel of math and physics courses before majoring in psychology. For his thesis, he programmed a Space Invaders-type game to test players’ reactions to varying levels of rewards, a humanized version of running rats through mazes.

Altmann split her childhood between Chicago and Kenya, where her field-biologist parents studied baboons. She majored in music at Reed, writing a thesis on African American gospel music and Mahalia Jackson. She met Morrison through the Reed College Sound Collective.

After college, Altmann worked at a Portland radio station and got her master’s in teaching. Then she and Morrison moved to Hawaii, where he ran his own software company and she worked her “dream job” as an environmental educator at the Hawai’i Nature Center. In October 1997, they brought baby Benjamin back to the mainland and bought a used 40-foot city bus. Morrison ripped out the seats so the family could live up front, and wired in solar panels to turn the back into a rolling software lab. For months, they wandered the country, stopping for Benjamin to play by a lake, or for Morrison to send code via the internet. In 2000, they parked the bus in Corbett.

“The thing we realized, going to all these places, was Portland was as good a place as any,” Morrison says.

Portland is better than most places. The Fanconi Anemia Research Fund (www.fanconi.org) is based in Eugene (University of Oregon President Dave Frohnmayer and his wife, Lynn, started the group in 1989, after their daughters were diagnosed with the disease). Researchers at Oregon Health & Science University in Portland have helped track down genes behind the condition and are studying possible treatments.

Surprisingly, with so much local expertise, it took doctors almost two years to diagnose Nina. She was delivered in April 2003—at 37 weeks and just over 4-1/2 pounds—with a constellation of problems that implied some genetic disease. But “her pediatric geneticist said he didn’t know what she had, and we’d probably never know,” Altmann says.

Nina was born with crossed eyes and corneas clouded an opaque white. “I spent a long time thinking she was going to be blind her whole life,” Morrison says. There were neurological and digestive tract abnormalities. And her thumbs were small and slightly out of place, a detail lost in the medical shuffle. “We kept asking people to look at the thumbs,” Morrison recalls. “They never did, or did and said not to worry about it.”

Over the next year, surgeons operated four times. A scan revealed normal brain anatomy. Morrison put the image on the family’s website with the caption, “My baby has a brain.”

“I had started to think: If she’s going to make it, which it looks like she is, she’ll be okay,” Morrison says. “Maybe it’s just been a crappy two years.”

next page