MOTHER WITH A DRIVE DEATH SPURS APPEAL TO BONE MARROW DONORS.

Byline: Holly Edwards Staff Writer

STEVENSON RANCH - Teresa LaRue said she had no idea anything was wrong with her 13-month-old son, Layne, until two weeks before his death.

The Stevenson Ranch woman and her husband, Scott, watched helplessly as their son's body gradually weakened and then shut down completely.

``It was extremely hard and everything happened so quickly,'' she said. ``He didn't really have a chance.''

After Layne's death in June 1995, he was diagnosed with X-linked lymphoproliferative disease - also known as XLP or Duncan's disease.

The rare genetic disorder is characterized by a defective immune system response to the Epstein-Barr virus, a herpes virus common among the general population, according to the National Organization for Rare Disorders.

For most people, exposure to the virus causes no symptoms at all, according to NORD. For those with Duncan's disease, however, exposure to the Epstein-Barr virus causes a life-threatening form of mononucleosis.

After Layne's death, doctors at UCLA Medical Center urged the LaRues to have their three other sons tested for the disease. While their oldest son Aaron, 11, was not affected, their 6-year-old son, Blayke, and 9-year-old son, Garrett, were diagnosed with the disorder.

The only known cure at the time was a bone marrow transplant, but doctors told the LaRues that a cord blood transplant could also cure their sons' defective immune systems.

Instead of transplanting bone marrow from adult donors, doctors injected cells from the placentas of newborn babies into the boys. Bone marrow cells in the cord blood then migrated to the boys' bone marrow and began reproducing, restoring their immune systems.

Since the life expectancy of children diagnosed with Duncan's disease is 10, the LaRues were desperate to find a cure for their sons and jumped at the chance to try the new procedure.

While the transplantation procedure was lengthy and painful - Blayke remained hospitalized for a year- the LaRue boys are now healthy and have fully functioning immune systems, LaRue said.

On the eve of what would have been Layne's 7th birthday, the LaRues say they want to help others who need bone marrow transplants by organizing a bone marrow donor registration drive.

``It's unbelievably hard to find a bone marrow or cord blood match,'' said LaRue. ``It's like winning the lottery.''

The event will be held Sunday from noon to 4 p.m. at Stevenson Ranch Elementary School.

The family is seeking 700 donors and is also trying to raise $14,000 to cover the $21-per-person registration fee.

A DJ from LA Groove Works will provide entertainment and 12 Razor scooters will be raffled off each hour, LaRue said.

``We're really hoping to use our experience to help other people who need bone marrow transplants,'' she said.

Anyone who would like to register as a donor or make a financial contribution after the registration drive can call LaRue at 799-0624.

CAPTION(S):

photo

Photo:

(color) Garrett, left, and Blayke LaRue have had lifesaving bone marrow transplants. Their mother, Teresa, in back in this April file photo, has organized a transplant drive, with plans to auction scooters.

David R. Crane/Staff Photographer