Two weeks have passed since a raid on a polygamist compound in Texas gave the nation a glimpse into some of the beliefs and practices of the secular FLDS church. Allegations of physical and sexual abuse, forced marriages of girls as young as 13 and plural marriages are reported in news publications around the world.
Church members allowed a few members of the media access in their compound to speak out against both the way the campaign was handled and how they and their children were treated. This is also seen in a rare environment outside the normal closed doors that served as a barrier between two very different worlds. The video depicts the so-called soft dresses in the handmaiden, the length of the dress, all styled with twisted hair. Combined with the beautifully built, log buildings and the surrounding solitude, one gets the feeling of stepping back in time, to a less complicated life.
The FLDS has always been a secretive society, but perhaps the most secretive of them all is the rare and debilitating disease that is increasing day by day in the number of children back in Hildale and Colorado, where the Texas members originated.
Fumarase enzyme deficiency is an irregularity that prevents cells from being able to transform food into energy. It brings a wide variety of devastating symptoms such as severe mental retardation, epileptic seizures, physical deformities and can go beyond. the patient does not care.
“The disease itself is very rare in the rest of the world,” according to Dr. Vinodh Narayanan of Arizona St. Joseph’s Hospital & Medical Center and Barrow Neurological Institute. Until recently, only about 13 cases were known worldwide. A few years ago, a pediatric neurologist named Dr. Theodore Tarby, began treating FLDS children in Colorado City and was shocked to find that several children were suffering from this genetic defect. Since the early 1990’s, about 20 cases have been documented. According to Dr. Tarby has
Unexpected consequences:
The genetic defect has been traced back to one of the founding patriarchs of the community, the late Joseph Smith Jessop and his first wife Martha Moore Yeates. One of the daughters of the second marriage of the founding patriarch and religious leader, John Yeates Barlow. By the time Joseph Smith Jessop died in September 1953, he already had 112 grandchildren, many of them directly descended from him and Yeates.
According to community historian and former FLDS member Benjamin Bistline, more than half of the 8,000 people now living in Colorado City and Hildale are blood descendants of Barlow and Jessop. More than half of the population is believed to carry the recessive gene. If the parents carry the geneparents, it is likely that their children will be affected or become carriers, passing the defect on to their offspring.
“This problem is going to get worse and worse and worse,” predicts 40-year-old Isaac Conchense, another lifelong resident of Colorado City, who was born and raised in the FLDS before being ousted in January 2004 by Conchense’s sister’s ex-wife. had two children afflicted with fumarase deficiency. “Now we’re just looking at the tip of the iceberg.”
Horrible disease:
Most children born with Fumarase deficiency usually do not survive childhood. Those who survive often suffer from debilitating conditions, require constant care, and are often unable to walk or even sit.
The kids I saw had terrible seizure-disorder”>acquired disorders and developmental delays,” said Dr. Alec. just below the chronological age. Some fumarase-deficient children, he says, develop a small degree of motor skills at the time: “Agant” t remain infantile throughout life . They are progressing to some extent, but behind their peers.
Dr. Tarby says more of the children “can say at least a word or two, but all of them have severe mental retardation” with IQs of less than 25. Their minds, he says, “are wonderfully formed,” and are often lacking. large areas of brain matter are replaced by water. An MRI of the brain of one fumarase-deficient child showed that more than half of the brain was missing.
Conchensis says that he once saw a smoker suffer a seizure while sitting with his mother and two others. children also suffering from disease. “All of a sudden with this one little one, everything is contracted and the back is so hard the head is almost touching the fingers,” says Conchensis. “They are absolutely helpless,” he said.
The price of faith:
The only long-term solution to the health crisis is for the Barlows and Jessops to have children with spouses from outside the polygamous community. “Go out and comply,” said Dr. Aleck, director of the Pediatric Neurogenetic Center at St. Joseph’s Hospital.
But according to Bistline, that’s not going to happen. “They discourage new blood,” said a former member. “They claim to be the chosen one, the chosen few,” he explains. “And they say that marriage is closely guarded by royal, so to speak, blood.”
For those who practice a religious doctrine that requires men to be in strict compliance with religious leaders, women must partially comply. to increase the numbers of the sect by as many children as possible, the change is inadvisable. Rather than taking steps to avoid the problem, FLDS conservatives believe their duty is to accept fate. “They think it’s from God,” says Wyler
But if they refuse to stop and rethink their path, the biggest issue facing the FLDS in the future is one of continuity. If precautionary measures are not adopted by the group, further intermarriage between the Jessop and Barlow families will certainly result in more afflicted children, perhaps a hundred new cases, for posterity to suffer the consequences.
