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Genetic Disorder Spreads Through Families After a Wave of Inbreeding

By Jason Szep
Jun 14, 2007

COLORADO CITY, Arizona (Reuters) - In a dusty neighborhood under sheer sandstone cliffs studded with juniper on the Arizona-Utah border, a rare genetic disorder is spreading through polygamous families on a wave of inbreeding.

The twin border communities of Hildale, Utah, and Colorado City, Arizona, have the world's highest known prevalence of fumarase deficiency, an enzyme irregularity that causes severe mental retardation brought on by cousin marriage, doctors say.

"Arizona has about half the world's population of known fumarase deficiency patients," said Dr. Theodore Tarby, a pediatric neurologist who has treated many of the children at Arizona clinics under contracts with the state.

"It exists in a certain percentage of the broader population but once you get a tendency to inbreed you're inbreeding people who have the gene there, so you markedly increase the risk of developing the condition," he said.

The community of about 10,000 people, who shun outsiders and are taught to avoid newspapers, television and the Internet, is home to the Fundamentalist Church of Jesus Christ of Latter Day Saints (FLDS), a sect that broke from the mainstream Mormon church 72 years ago over polygamy.

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So that means chasing the boys out.

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The polygamous settlement is largely controlled by the Fundamentalist Church of Jesus Christ of Latter-day Saints and allies of its jailed prophet, Warren S. Jeffs, who is about to stand trial on charges of sexual exploitation.

Now 16, living with a sympathetic aunt and uncle, Woodrow is one of the luckier boys, though he rarely sees his parents and says, plaintively, “I really miss them.” Some boys end up in unsupervised group rentals they call “butt huts” because of the crowded sleeping, while others live in cars or end up in jail.

Utah officials say they realized the extent of the problem only about four years ago, when they learned that hundreds of boys from the sect were roaming on their own and often in distress. While most have construction skills to help earn a living, few have more than a junior high education.

“The house is a milestone, but it’s just a start,” said Paul Murphy, director of communications and policy for the Utah attorney general’s office who has worked with state and private agencies to muster help. “We’re finally reaching out, but it’s been painfully slow.”

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They grew up in the closed communities of Bountiful, British Columbia and Colorado City, which straddles the Utah-Arizona border. This is a society where a child has no individual identity. It is supplanted by blind obedience. They emerge uneducated, unworldly and unwanted. Some are damned by their religion, denied by their families. Others are still puppets of their religion's powerbrokers, working to support a church that doesn't support them.

The official name for the church is Fundamentalist Church of Jesus Christ of Latter Day Saints - FLDS. When the mainstream Mormon Church in Utah renounced polygamy in 1890 to gain statehood, the Fundamentalists carried on with their core belief: one man, multiple wives. The more wives a man has on this earth, the higher he climbs the celestial ladder in heaven. As children reach puberty, the church's leader dictates who will marry whom. The group's powerful elders end up with most of the girls, leaving a surplus of virile young men. Polygamy's Lost Boys tells the stories of three boys from that "surplus," as they struggle to survive in the world they were raised to believe is wicked.

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Ben Blackmore, 26, is a nephew of Winston Blackmore, the former powerful Bishop of Bountiful and, to many of the faithful, still the true leader of the fundamentalist Mormon faith in Canada. Ben is one of 14 children born to his father's two wives.