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Looking for a Chance at Life : Health: Ryan Worthington's parents desperately need a bone marrow donor to save him from a rare disease that has already killed his sister.

March 22, 1992|IRENE CHANG | TIMES STAFF WRITER

WALNUT — At 17 months, Ryan Worthington is a feisty, playful, blue-eyed blond who likes dancing to Sesame Street tunes.

He has, though, a few telltale symptoms of his fatal disease: a larger than normal head, slight curvature of the spine and an inability to fully extend his arms and legs.

His parents, Robert and Tracy Worthington of Walnut, know what can happen to a child stricken with Hurler's syndrome, as Ryan is. Their daughter, Jennifer Marie, died at 28 months, almost four years ago, of heart failure that doctors now think was brought on by the same rare disease.

Now, in an effort made more desperate by the painful memory of their daughter, the Worthingtons are racing against time to find a bone marrow donor for Ryan. Doctors say that if the transplant occurs after Aug. 18, Ryan's second birthday, it might be too late to save his life.

"If we don't do this we're sure what's going to happen," Tracy Worthington said. "We've already buried one child."

The National Children's Cancer Society has given the Worthingtons $10,000 to search a computerized registry of 500,000 potential marrow donors, none of whom have tissue that matches Ryan's.

The cancer society also set aside $10,000 to test any future donors recruited by the Worthingtons. In addition, the Worthingtons have collected $5,000 in donations from the public. Following the example of other families, they are launching a donor drive Sunday and Monday at Mt. San Antonio College in Walnut.

Doctors hope a marrow transplant will arrest further complications from Hurler's syndrome, an inherited disorder that, if left untreated, usually leads to severe mental retardation and death by age 10.

Donated marrow would supply a particular enzyme that is missing in children with Hurler's. Without the enzyme, a carbohydrate accumulates in the body and leads to brain, heart, liver and skeletal abnormalities.

The Worthingtons are making television appearances and holding neighborhood meetings to appeal for money and donors. Their goal, Tracy Worthington said, is not only to save Ryan's life, but to educate other parents who might be ignorant about the dangers of Hurler's syndrome, which strikes one in every 100,000 children.

Jennifer Worthington's death in 1988 was a mystery to her doctors, who never suspected Hurler's syndrome and had attributed her stunted growth, scoliosis and club foot to a blood clot in her mother's placenta during pregnancy. When she died, doctors blamed a viral infection, Tracy Worthington said.

It was not until last month, when tests on Ryan showed he was suffering from Hurler's syndrome, that his parents and doctors realized why Jennifer died.

Complications brought on by Hurler's syndrome worsen dramatically after a child is 2, which is why doctors at the University of Minnesota--one of a dozen centers that perform marrow transplants on children with the disease--say Ryan must undergo a transplant before then.

"If a patient came to me now over age 2, the protocol would not allow me to take them on," said Dr. Chester Whitley, the pediatrician treating Ryan. "For patients that receive transplants later, the whole experience has been that if the child had severe neurologic damage (prior to the transplant); the brain is not able to learn. That's not a situation any parent would want."

Transplanting marrow into Hurler's syndrome patients is a relatively new procedure--the first such transplant was performed in 1980 in London--and doctors say the method is not a guaranteed cure, even when the transplant takes place early on.

"The disease progresses day by day, week by week, month by month," Whitley said. "If there has been brain damage before, that is something that's not reversible." In addition, medical experts say only 50% of patients who receive marrow from an unrelated donor--regardless of their particular disease--live more than a year after the transplant takes place.

Tanya Moore, a senior recruitment specialist for the National Marrow Donor Program, which runs the computerized donor registry, said the tireless efforts of parents like the Worthingtons are what inspire donors and fuel the program.

"It's a collective effort for families," Moore said. "The match (for Ryan) may not come from Mt. SAC. It could be from New York. We're looking for that needle in a haystack."

Tracy Worthington said she has no choice but to face the tremendous odds. "You do what you've got to do," she said. "If it doesn't work out, it's not going to be for lack of trying. These kids can't die for nothing."

HOW TO HELP

The Mt. SAC bone marrow donor drive is scheduled for today and Monday. Those interested in the donor test should go to the Student Center, Building 9C, at Mt. SAC, 1100 N. Grand Ave., Walnut. Donations of $45 cover the cost of testing each person's blood.

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