Some days on her way to her baby's germ-protected hospital room, Sarah Sangster felt compelled to stop right in the middle of Parnassus Avenue and gaze out to the ocean stretching flat and shining to the horizon. At home, in Arizona's Navajo country, the land appears as flat as the sea at midday. But in the morning, when people look to the east to greet the dawn, the slanting sun reveals the rims of hidden canyons glowing in red and gold. Four distant sacred mountains protect the people within their boundaries. Here in San Francisco, the canyons were hill-climbing rows of hip-to-hip buildings, and every day she rode steel elevators to scale their heights, to fight homesickness and fear with science, hope and prayers.

From the day her baby daughter was airlifted to UCSF Children's Hospital, Sangster remembers feeling as if she had been dropped into a different world. Her friend, Brenda Begay, felt the same disassociation. Their babies were born a day apart in the same hospital in Winslow, Arizona. They were diagnosed a month apart with severe combined immune deficiency (SCID), a rare, inherited condition that endowed them with virtually no immune systems, none of the T cells or B cells that normally protect the body against infection.

Pediatric immunologist Morton Cowan and the UCSF Children's Hospital Pediatric Bone Marrow Transplant Program welcomed the infants and families into the medical universe, replete with hospital masks and gloves, catheters and intravenous fluids. Cowan explained that a gift from the spongy marrow inside a healthy person's bones could engraft healthy bone marrow into the baby, so her body could produce the disease-fighting cells of a functioning immune system. The parents learned that before bone marrow transplants, almost no child with SCID survived for long. And they discovered that a unique form of the disease, later dubbed SCIDA, has caused heartbreak for some Navajo parents over many generations.

When they look back on that time, Sangster and Begay and their husbands say they understand the fear of every parent whose child has a rare and life-threatening condition.

Now, 16 years later, babies Shailene Sangster and Jolana Begay are graceful young women with their eyes on the future. They are among the oldest survivors of SCIDA, and they are not alone. Twenty more Navajo babies have come to UCSF for care; Cowan's group has treated more Native Americans with SCID than any other U.S. BMT center. UCSF discoveries -- including the gene that causes SCIDA -- have refined and individualized the treatment that saves these children's lives and the care that supports their health as they grow.

Over those same years the Navajo Area Indian Health Service (NAIHS) hospital in Tuba City, Arizona, has become a center of continuing care for children with SCID. Its pediatrics clinic is far more likely than most big-city hospitals to recognize SCID symptoms in a baby and prescribe the right care. Because this disorder is so rare it was not even recognized until scientists began to investigate the immune system in the 1960s.

The combined skills of NAIHS pediatricians and UCSF pediatric bone marrow transplant experts have built an arc of protection over the SCID children in the region. When Cowan and a team from UCSF join NAIHS pediatrician Diana Hu to hold a SCID clinic in Tuba City, Navajo families drive hundreds of miles from all over the Four Corners of the Southwest for a checkup and a reunion.

Together with dedicated nurses, doctors, social workers, child life specialists and scientists, Hu and Cowan are working to help these children grow up with a condition that is at present partly -- but not completely -- cured.

The Navajo families have responded in a remarkable exchange, welcoming these medical teams as part of the community that raises each child.

"They are teaching us, patiently, how to include their way of life and traditions as we care for their children together," Cowan says.

Next - Translating Science

Page 3 - SCID Genes

Page 4 - Treasured Laughter

Page 5 - UCSF in Tuba City

Page 6 - SCID Kids' Caregivers

Page 7 - Assertiveness Training