A rare and once-baffling disease forces Navajo parents to cope as cure is sought

[Thunderwolf, MSN, RN]

In the Navajo population, one in every 2,500 children inherit SCID, a condition that endows them virtually no immune system. In the general population, SCID is much more rare, affecting one in 100,000 children.

Before Grace was born, Trujillo had researched SCID, and knowing that she and her now ex-husband had a one in four chance of having another baby with the condition, she insisted on a blood test. Although doctors didn't think the test was necessary, Trujillo knew not to keep quiet this time around.

"The longer it took, the more apprehensive I got," Trujillo said. "When I saw the doctor come into the delivery room, I could tell there was something wrong. He told me, 'Yeah, she tested positive for SCID."'

Prior to the late 1970s, the illness baffled doctors working with Navajo children. Over generations, families would lose children without explanation.

Dr. Mortan Cowan, who has worked with SCID patients for more than two decades, encountered his first case in the mid-1980s when he was asked to watch over Navajo patients for a doctor in Denver who went on sabbatical.

To Cowan, the disease appeared to be linked to genes, so in 1986 he and a research geneticist decided over lunch to find the gene - a quest that would take 15 years, Cowan said.

"When we ultimately found the gene and went back, we were able to show that it was the same gene mutation in every Navajo and Apache child that had the disease," Cowan said.

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