Child to Have 2nd Transplant Operation : Medicine: Earlier bone marrow procedure failed to rid 2-year-old of Hurler’s syndrome, a rare metabolic disease.

Ryan Worthington, the Walnut toddler who has a rare metabolic disease, will have to undergo a second bone marrow transplant in an effort to save his life, his mother said.

Ryan had a bone marrow transplant at the University of Minnesota’s children’s hospital Aug. 12, but the procedure did not rid Ryan of Hurler’s syndrome, doctors told his parents.

The boy is staying with his parents in an apartment near the hospital, running around like a typical, happy 2-year-old and learning his alphabet, his mother, Tracy Worthington, said in a recent telephone interview. She said her son tolerated the first transplant and 75 days of hospitalization unusually well.

“He only had two (high) temperatures. He seems normal to us, except he’s a little bald,” she said.

But Ryan’s innate strength also proved to be his downfall as far as the first transplant is concerned, his mother said. Ryan’s immune system fought off the donated marrow and rejected it, she explained.

“We are very disappointed,” Worthington said. “It’s been very hard the last few years, and we’re just living one day at a time.”

Doctors at the Minneapolis hospital who specialize in metabolic disorders had hoped that the healthy bone marrow would place an absent enzyme into Ryan’s system that would rid his body of cellular waste material. Doctors plan to perform the second transplant sometime after Christmas, Worthington said.

“The second transplant is very scary for us,” she said, explaining that Ryan will be weaker the second time around and the procedure will be riskier. “But if we don’t do it, he’s going to get sick and die.”

Children such as Ryan who are born without the enzyme experience a buildup of cellular waste matter that, after age 2, starts to cause a range of abnormalities--including bone and skeletal malformations, mental retardation and clouding of the corneas. By the age of 7 to 10, Hurler’s is usually fatal.

A local fund-raising drive helped the Worthington family get to Minnesota after a donor was found for Ryan from a transplant registry last summer. Doctors hope to perform the second transplant with extra marrow that was frozen after the first procedure, or with a new dose of marrow if the original donor--a 34-year-old East Coast man found after a six-month search--is available.

Because Tracy Worthington, and her husband, Robert, are carriers of Hurler’s, they could not be donors. The couple’s daughter, Jennifer, died in 1988 at 27 months of age after a virus attacked her heart. Only after their son’s Hurler’s was diagnosed last year did doctors conclude that she probably had the same disease, which is so rare that no more than 1,200 cases have been diagnosed worldwide.

A foundation organized to take donations for Ryan’s medical expenses can be reached by writing: Friends of Ryan, P.O. Box 1806, Walnut, Calif. 91788.