Hidden Valley Road - Inside the Mind of an American Family - Robert Kolker Page 0,103

times—allowing the genetic code, once the great unexplored realm of human biology, to be deeply probed for the first time. With these new tools, researchers elsewhere already had isolated the gene for one disease: phenylketonuria, or PKU, which caused intellectual disabilities. Others were going after Huntington’s disease. But those illnesses were a far cry from schizophrenia, which almost everyone agreed had to be the work of not just one mangled gene but many. A disease as complex as schizophrenia probably had a genetic makeup no one could completely see with the tools available at the time. The thought of traveling the country, collecting DNA from families, struck many of her colleagues in other labs at NIMH as a fool’s errand.

But DeLisi was as sure as ever that multiplex families held the answers. She didn’t mind if others thought of her as out on a limb. “Lynn would think along lines other people wouldn’t,” Gershon remembered. “She could go in different directions.”

She found her first family without having to leave the hospital. A patient Gershon had been treating in his clinical practice happened to have a brother who had also been diagnosed with schizophrenia. DeLisi learned that the brothers’ parents, Jim and Carol Howe, had been among the founders of the National Alliance for the Mentally Ill (now known as the National Alliance on Mental Illness), an advocacy organization that started in 1979 in Minnesota and was expanding with new branches around the country. If DeLisi wanted to find families quickly, she thought, NAMI would be the perfect ally.

DeLisi contacted regional chapters of NAMI and asked them to advertise her study in their newsletters. The families that came forward generally had two or three people with schizophrenia; one or two families had as many as four. As more responded, DeLisi hired a social worker to visit families she could not meet with personally. But when she heard about the Galvin family of Colorado Springs, DeLisi knew she had to fly there and see them herself.

As she walked through the door of the house at Hidden Valley Road, she couldn’t help but recognize a perfect sample. This could be the most mentally ill family in America.

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DELISI ASKED EVERYONE in the Galvin family, even those who were not diagnosed mentally ill, to participate in psychiatric interviews to confirm or rule out a diagnosis for each of them. Then she drew blood samples in hopes of noticing something in this family’s genetic makeup that might indicate a propensity toward mental illness. Some family members might be carriers who did not get ill, she believed; the markers could be present in everyone.

All the sick brothers participated without much of a fuss; Mimi had made DeLisi’s work easier in the way she had always closely supervised the care of all of her sick sons. Among the six well siblings, everyone agreed except for Richard—the sixth son, once the teenage schemer, now a mining investor in Denver—who was still too unnerved by the family illness to engage in any of his brothers’ treatments. (John, the third son, now a music teacher in Idaho, had his blood drawn remotely and sent to DeLisi’s lab.)

Lindsay and Margaret came away feeling hopeful that the research might lead, someday, to a breakthrough. The look on Mimi’s face, meanwhile, was practically beatific. The most important breakthrough, in her view, had already happened. She had been waiting for decades for someone like Lynn DeLisi to come knocking on her door. Now she was finally here.

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ROBERT FREEDMAN’S FIRST visit to Hidden Valley Road took place very soon after Lynn DeLisi’s. On that day—and on subsequent visits by various Galvins over many years to Freedman’s lab in Denver—Freedman and his team from the University of Colorado Medical Center’s psychiatric research division recorded the Galvins’ brain waves, drew their blood, and administered questionnaires. As he got to know the family, Freedman marveled at how Mimi kept the boys at home much longer than many families would have. “She was delightful,” he said.

Freedman was stunned by the decision to send one of the daughters, Margaret, away to live with another family. How horrible things must have been at home, he thought, for Mimi and Don to even entertain such a drastic decision.