Gene Disorder Complicates Sect Custody Fight The legal battle over the custody of 462 children taken from a polygamist sect in West Texas is complicated enough. But some of the children involved also suffer from a rare genetic disorder.

Gene Disorder Complicates Sect Custody Fight

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This is WEEKEND EDITION from NPR News. I'm Liane Hansen.

In this part of the program, we have an update about the 462 children taken from a polygamist ranch in Texas, and we'll spend some time with an investigative reporter who has written extensively about this sect, called the Fundamentalist Church of Jesus Christ of Latter-Day Saints.

But first, the legal battle over the children's custody continues. There are hundreds of lawyers involved, representing the children, their parents, the FLDS church and the state.

As NPR's Wade Goodwyn reports, it's a very complicated situation.

WADE GOODWYN: While trying to sort through the intricacies of Texas family law, it's helpful to keep this in mind: when it comes to allegations of sexual abuse of minors, the law gives the state considerable leeway to protect the children's interest. So, even though the state of Texas swooped into the Yearning for Zion ranch and scooped up all the children and has now taken temporary custody of them, since this involves allegations of widespread sexual abuse, Texas Judge Barbara Walther has sided with the state - at least so far.

When the state takes someone's child it has committed a very serious interference with a parent's rights, and so the law requires that the state demonstrate to a judge's satisfaction that it has good cause for taking such an invasive act. This demonstration takes place in what is called a full adversary hearing - parents on one side, state on the other, judge as the decider.

But lawyers for the mothers claim that the hearing that took place in Judge Walther's court wasn't proper because it wasn't individualized. In other words, Texas child welfare officials didn't identify individual parents and individual children in their suit. So, lawyers for the mothers intend to ask a Texas appeals court for relief.

The problem is sorting out which FLDS children belong to which FLDS parents, and that is an issue that has confused so far. That's why the state conducted DNA testing. And until Judge Walther has satisfied herself that she can connect the family dots, an appeals court may be unlikely to intervene.

Wade Goodwyn, NPR News, Dallas.

HANSEN: As of now, all of the children from the polygamist compound have been moved into temporary foster homes. Authorities say two teenagers in custody are pregnant and as many as 30 minor girls have children of their own. As Texas officials continue their investigation, we want to examine an issue that has received very little scrutiny or media coverage.

Over the years a number of children from the FLDS sect have been diagnosed with fumarase deficiency. It's a rare disease that causes acute retardation and severe physical problems. The disease has struck these children because of a recessive gene that has been spread through decades of inbreeding.

John Dougherty is an investigative reporter who has written extensively about this issue. He covered the FLDS community and its leader, Warren Jeffs, for several years when he worked at Phoenix New Times, a weekly newspaper. And he's been covering the latest FLDS story for the New York Times and he joins us from Springdale, Utah. Welcome to the program.

Mr. JOHN DOUGHERTY (Investigative Reporter, New York Times): Good morning. Thank you.

HANSEN: First of all, what exactly is fumarase deficiency?

Mr. DOUGHERTY: Fumarase is an enzyme in the Kreb's cycle, and when it's deficient it breaks down the ability of the body to process food properly. It also causes all sorts of physical deformities, as you mentioned. The most troubling of which is a large amount of water replaces brain matter, and the children who are born with this affliction have severe physical deformities as well as very, very low IQs.

HANSEN: Why is it occurring in the FLDS community?

Mr. DOUGHERTY: It showed up as a recessive gene in the 1930s in one of the patriarchs, Joseph Smith Jessup. And he had more than 112 grandchildren by the time he died in 1953. And a lot of the cousins and grandchildren of Joseph Smith Jessup intermarried a couple of generations later. And when they did that, it set the stage for fumarase deficiency to start to appear in the young children.

HANSEN: Now, most of the people living at the Texas ranch where the children who were removed, they came there from the group's other communities in Colorado City, Arizona and Hildale, Utah. And you've written that as many as 20 children in Colorado City had been stricken with this disease and that the number was expected to grow because of the inbreeding between the two founding families.

A Texas child welfare official said he doesn't believe any of the Texas children doesn't have the deficiency. In fact, he's never even heard of fumarase deficiency. What are the chances that some of these Texas children might develop it?

Mr. DOUGHERTY: The chances are very high, according to the geneticists who have studied this extensively, including Dr. Theodore Tarby from the state of Arizona's Child Rehabilitative Services and other folks at the University of Arizona.

The problem is that the Jessups and the Barlows, the two primary families in the fundamentalist church, have been crossing lines for generations now, and this recessive gene is going to continue to, at time, manifest in newborn children.


Mr. DOUGHERTY: So Texas is very likely going to have this problem. If it hasn't already occurred, it's probably going to occur very soon.

HANSEN: You reported that health officials in Arizona had asked FLDS members to stop these intermarriages, to put a halt to the children getting this disease, and the answer was no. Tell us more about that.

Mr. DOUGHERTY: The answer was no. Dr. Tarby went up and had a town meeting - I believe it was in 2004 - met with the community and told more than 100 folks who were gathered that the situation is going to continue unless you stop the interbreeding. And the folks up there response was, well, we're all related up here and if a child is born with a genetic deficiency, that's God's will, it's God's test of us to handle the situation as it is.

HANSEN: Did the state do anything to follow-up?

Mr. DOUGHERTY: Not that I know of. The state's been very uncooperative in providing information concerning how many people have fumarase deficiency and how much it's costing the state to treat these children.

HANSEN: And so the taxpayers are paying money to provide healthcare for these children?

Mr. DOUGHERTY: Yeah. The taxpayers are paying the bill, probably the healthcare for these children, and the healthcare is expensive. These children need continuous medical treatment. It's just a tragic situation that's going to continue unabated because the fundamentalist church does not want to stop the practice that caused it to manifest.

HANSEN: You've been covering the FLDS community for several years. What's your take on the recent events in Texas? I mean, if there's child abuse and neglect going on within this sect, why didn't authorities in Arizona or Utah take similar actions in the past?

Mr. DOUGHERTY: In Texas, the compound was surrounded by a fence and everybody was basically locked inside. In Colorado City, Arizona and Hildale, Utah, these twin cities, they're basically open communities and people live in individual homes. So the state of Arizona and the state of Utah did not want to go in and repeat the 1953 raid, where Arizona came in and cleared everybody out, arrested all the men, women and children and separated them, put the women and children in foster care for two years before the Supreme Court of Arizona ruled that the hearing was unconstitutional, that the women and children return home.

So, Arizona and Utah are going on a case-by-case basis. If they receive a report of underage sexual abuse going on, they have been investigating. But even a bigger problem, which Texas is soon going to find out, is trying to get these young girls to testify against their spiritual husbands. This is not an easy task, and Texas is going to find it very, very difficult to get people to testify.

HANSEN: You've probably seen the mothers of the Texas children on television, criticizing authorities for taking away their children. Texas officials are arguing they need to do that because they want to make sure that the children are safe and that they aren't being coached by their mothers. What's your view about this?

Mr. DOUGHERTY: Well, I think the children are going to recite exactly what they've been trained to recite, just like the mothers are saying exactly what they've been trained to say. This is a very, very authoritarian system. Every once in a while you'll get a wild card in there who's willing to testify or speak up and tell the truth. But otherwise they're going to say what they've been told to say.

Now, separating the children out from their parents - people have to remember, in this culture, the parents do not believe the children belong to them. They are instructed by their religious leaders that the children belong to the priesthood and the priesthood is controlled by the prophet and the prophet is Warren Jeffs. If Warren Jeffs says that those kids should move to wherever because it will make for a better climate for their spiritual upbringing, they will do it.

So the lockstep mentality here is extreme.

HANSEN: John Dougherty is a reporter. He is also president of Investigative Media, a company that specializes in investigative journalism, and he joined us from Springdale, Utah.

We contacted the spokesman for the Fundamentalist Church of Jesus Christ of Latter-Day Saints several times for comment but received no response.

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