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"If you look in the literature, you won't find another dozen cases in the world that have been reported," says Tarby.
Experts say the number of children afflicted in the FLDS community is expected to steadily increase as a result of decades of inbreeding between two of the polygamous sect's founding families -- the Barlows and the Jessops.
The genetic defect has been traced back to one of the community's founding patriarchs, the late Joseph Smith Jessop, and the first of his plural wives, according to medical literature, the Mormon Church genealogy database and residents of the community familiar with Jessop and Barlow family histories.
Joseph Smith Jessop and his first wife, Martha Moore Yeates, had 14 children. One of their daughters married another of the community's founding patriarchs and religious leaders, John Yeates Barlow. By the time Joseph Smith Jessop died in September 1953, he already had 112 grandchildren, the majority of them directly descended from him and Yeates.
Fifty-two years later, more than half of the 8,000 people now living in Colorado City and Hildale are blood descendants of the Barlows and the Jessops, says Benjamin Bistline, a lifelong resident of the area who has published a book, Colorado City Polygamists, on the history of the fundamentalist community.
An unknown number -- but believed to be in the thousands -- of Barlow/Jessop descendants carry the recessive gene that causes fumarase deficiency. If both parents carry the gene, the likelihood that their offspring will be affected by the disease or become carriers of the gene greatly increases, medical experts say.
"It's like any inbred disorder," Tarby says. "If the community gets larger, the number of people with fumarase deficiency gets larger."
Aleck says the fact that so many people in the polygamist enclave are blood relatives of the founding Barlow and Jessop families "shows the magnitude of the problem."
The disease is not widely known about even in Colorado City, a place where even normally public events such as marriages are conducted in secret. But residents who are aware of fumarase deficiency fear that the number of children afflicted with the disease will indeed increase.
"This problem is going to get worse and worse and worse," predicts 40-year-old Isaac Wyler, another lifelong Colorado City resident who was excommunicated from the FLDS in January 2004. Wyler's ex-wife's sister has had two babies afflicted with fumarase deficiency. "Right now, we are just looking at the tip of the iceberg."
For more than 70 years, all marriages in the isolated towns have been arranged by the leader of the FLDS, a breakaway sect of the Salt Lake City-based Mormon Church.
Marriages among first and second cousins have been common for decades in the community, where religious doctrine requires men to have at least three wives to gain eternal salvation. Only the FLDS prophet can arrange and perform polygamous marriages, and those marriages are taking place in a community in which almost everybody is related.
The current FLDS prophet is 50-year-old Warren Jeffs, who has not been seen publicly since August 2003. Last June, Jeffs was charged with seven felonies by Mohave County, Arizona, in connection with his performance of "spiritual" marriages of three underage girls to already married men. He was placed on the FBI's most wanted list last August. Eight other Colorado City polygamists have been indicted by a Mohave County grand jury for having unlawful sex with underage girls who were their plural wives.
The indictments have come amid a three-year investigation by New Times of the FLDS community. That probe has uncovered widespread sexual abuse of young girls forced into polygamous marriages that, until recently, was downplayed by Arizona political leaders and law enforcement.
The state not only ignored the crimes for decades, it helped facilitate them by allowing the FLDS polygamists to set up a town government, a public school district and a police department that have received tens of millions of dollars in taxpayer funds despite the fact that polygamy violates Arizona's Constitution. The FLDS has had an iron grip on the local governments, because it has been impossible to get elected or hired to a taxpayer-funded post without the church's blessing.
The fundamentalist community has also benefited immensely from state health-care services for the poor and indigent by receiving more than $12 million a year in state assistance in Arizona to pay for health-insurance premiums.
It turns out that taxpayers also have been footing the bill for the fumarase deficiency children born to polygamists who insist that plural marriage involving close relatives is their divine right.
There is no doubt in the mind of any expert interviewed by New Times that the practice of polygamy combined with inbreeding has fostered the spread of fumarase deficiency.
"Polygamy leads to sexual predation, and that leads to genetic problems," says Rehabilitative Services' Tarby. "If you stop the sexual predation, you stop the genetic problem as well. But [FLDS members] don't think of it as sexual predation. That's the big problem."
"This man has left nothing of his worldly worth, but he has left far more than most people of God's work. There isn't another man in the U.S. that can boast this man's posterity," Life magazine quoted Virgil Jessop as eulogizing at the September 1953 funeral of his 84-year-old father, Joseph Smith Jessop.