Fighting Chance : Family That Lost a Child Seeks Donors to Save 2 Other Sons

OXNARD —  Layne LaRue seemed like a perfectly healthy 13-month-old before he came down with a fever in June, his parents said.

Less than two weeks later, before doctors determined why his body could not fight off disease, the boy was dead.

Now, Scott and Theresa LaRue of Silver Strand Beach near Oxnard have learned the worst: Their other two children are also afflicted with the rare immune-system disorder that took Layne’s life, X-linked lymphoproliferative disease.

Unless the LaRues can find a perfect bone marrow match, the boys will almost certainly die. Garrett, their sandy-haired 3-year-old son, has less than one-third the immune capacity of normal children. Blayke, their 6-month-old baby, has almost no immune system at all.

As a precaution, the couple has already taken Aaron, Theresa LaRue’s 5-year-old son from a previous marriage, out of kindergarten at Hollywood Beach School to reduce the possibility he will encounter diseases and contaminate the other boys. Aaron’s playmates are no longer allowed inside.

“Our house used to be the house all the kids came to,” said Theresa LaRue, sitting at the family dinner table this week with her husband and children. “Now we can’t let anyone in because they could be carrying germs. We can’t get out of the house. No Disneyland, no anything.”

With help from friends, family and co-workers, the LaRues are launching a desperate drive to save their children.

A Ventura group has agreed to dedicate a bone marrow donor drive on Sunday to the LaRues. The Alhambra Fire Department, where 32-year-old Scott LaRue is a paramedic, is planning a series of fund-raisers and marrow-testing events to tap the firefighting community.

And LaRue’s father, a lieutenant with the Los Angeles Police Department’s North Hollywood Division, is also planning to put out the word among the law-and-order ranks.

“It really hits us hard in the heart,” said Alhambra Fire Capt. Brian Savage, who is organizing a golf tournament, spaghetti dinner and donor drive to help the LaRues. “We’re such a close-knit family here. This is just like multiplying it a hundred-fold to hear that his other boys could die too.”

Scientists have yet to identify the gene that causes the disorder, which is passed from unaffected mothers to their sons. Theresa LaRue said she knew of no history of the disease in her family.

Of the roughly 300 boys who have been diagnosed with XLP since the male-only chromosome disorder was discovered in 1969, about 80% died before they were 10 years old, according to Prof. Thomas G. Gross of the University of Nebraska, which operates the world’s only XLP research center.

Finding a bone marrow match from someone other than a sibling is extremely difficult, he said. Doctors have said that the bone marrow of the boys’ half-brother, Aaron, does not match.

The LaRues are thinking about having another child to obtain bone marrow and save the boys, but the procedure would be tricky: The child would have to be a girl to ensure that it would not be susceptible to XLP. Furthermore, by the time the child is born, it might be too late for Garrett and Blayke, Theresa LaRue said.

“It just feels like we’re numb from everything that’s happening,” she said. “We just go through the day and do what we have to do. Thinking about what might happen is just too devastating.”

Garrett has already contracted an ear infection, but doctors were able to contain it before complications set in. Cancer of the lymphoid glands (lymphoma) and infectious mononucleosis (mono) are the most common killers of boys with XLP.

Layne had only a fever when he first became ill while the LaRues were vacationing in Arizona, his parents said, but his condition worsened, and his testicles began to swell. Worried that he might lose the ability to have children, they took him to a hospital in Las Vegas, where doctors were able to treat the problem.

A few days later in Ventura County, however, Layne began vomiting. The LaRues took him to a pediatrician, who discovered Layne’s liver was swollen. At Harbor/UCLA Medical Center in Los Angeles, doctors found he had the mono virus. They also learned that Layne’s immune system was not working properly. He died a few days afterward.

The UCLA immunologists believed Layne had leukemia. Only after he died did they discover he had XLP. But at that point, the difference would hardly have mattered, the LaRues believe.

“He just went downhill really fast,” Scott LaRue said. “All the reports kept coming back worse and worse. He fought it, but he just couldn’t fight it off.

“We try to think why this happened to Layne,” he added. “We think it was to tell us about the disease, to save our other kids. Losing two more would be too tough.”

Lt. Ron LaRue, who heads the North Hollywood Division’s detective bureau, said he has arranged through the LAPD’s medical liaison to send out a note asking his colleagues to take a blood test to help find a match for his grandchildren. The note would be sent along with regular notices that all LAPD officers receive.

“I’m sure we’ll get a good response, but it’s extremely difficult to find a perfect match,” he said. “I’m trying to be optimistic. . . . It’s all you can be.

Scott and Theresa LaRue are also doing their best to think positive. He spent Monday visiting the Oxnard and Ventura fire departments to gather support, while she worked on a flyer featuring pictures of Garrett and Blayke to let people know about the donor drive at the Ventura Street Fair.

“We’re just hoping that there’s a perfect match somewhere,” Theresa LaRue said. “We’re going to find it.”

Times staff writer Julie Tamaki contributed to this story.

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FYI

* SUPPORT: To help the LaRue family and others in need of bone marrow, call the American Red Cross at (800) 843-2949, Ext. 4594.

* FINANCIAL AID: To assist the LaRues financially, send contributions in care of the family to the Red Cross Bone Marrow Registry Program, 1130 S. Vermont Ave., Los Angeles, 90006.

* DONOR DRIVE: The Ventura donor drive will be held Dec. 3 on Main Street in front of the E.P. Foster Library.