Marrow Donor Found for Ailing Toddler
For six excruciating months, a computer scanned, and rejected, prospective bone marrow donors for little Ryan Worthington.
As the 23-month-old Walnut boy’s birthday drew nearer, his family fretted that they would not find a suitable donor before the effects of Ryan’s rare metabolic disorder became irreversible. But last week, almost miraculously, a match was found.
Now Ryan is bound for Minnesota to receive an infusion of healthy bone marrow.
Robert and Tracy Worthington, who lost another child to the disease four years ago, know little about the 34-year-old stranger from the East Coast who could give their son a second chance at life. They do not even know his name.
“He must be a very compassionate person who has a great understanding of others and a need, or desire, to help,” Robert Worthington said. “This is how (I believe) he’s made his decision to give the gift of life. How more precious could that be than to give it to a child?”
Ryan has Hurler’s syndrome, a rare disease that, if untreated, causes 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. But if a victim undergoes a successful bone marrow transplant before age 2, when the disease typically starts to manifest serious side effects, there is hope for a normal life, medical experts say.
Hurler’s is one of a family of diseases known as mucopolysaccharidosis disorders, according to Mary Stanik, a spokeswoman for the University of Minnesota Hospital and Clinic. It is so rare and sometimes difficult to detect that no more than 1,200 cases have been diagnosed worldwide. A child with Hurler’s is born without an essential enzyme needed to rid the body of cellular waste material. In a successful transplant, the donor marrow places the needed enzyme into the patient’s metabolism, correcting the problem.
Since 1983, 64 bone marrow transplants have been performed at the University of Minnesota on patients with disorders such as Hurler’s. The Minneapolis university is home to a group of physicians who specialize in mucopolysaccharidosis disorders and have pioneered treatment methods, Stanik said. Of the 29 transplants done between 1987 and 1990, 73% of patients who received marrow from a related donor were still living after two years, she said. For patients, such as Ryan, with a non-related donor, the survival rate after two years was 62%.
It was with such statistics in mind that Robert Worthington packed this week. Tracy Worthington was already in Minnesota arranging housing. The family planned to stay near the university’s Variety Club Children’s Hospital for at least five months.
“I think we’re going to make it. I’m confident. I put a lot of faith in God to do this miracle for us,” Robert Worthington said.
Kathy Rogers, a friend of the family and president of the Glendora-based Parents’ Heart Assn., said the couple had mixed emotions as they prepared for the transplant.
“On one hand, they’re elated we found the donor, but they’re also under so much pressure,” Rogers said. “It’s very intense, thinking about what they’ll do if this doesn’t work and they lose another one.”
The Worthington’s daughter, Jennifer, died in 1988, at Christmastime, of a virus that attacked her heart. She was 27 months old. It was not until after Hurler’s was diagnosed in Ryan last February that doctors concluded that Jennifer most likely had the same genetically transmitted disease.
Both parents are carriers of the disorder, so they could not be marrow donors for Ryan. When their son was found to have Hurler’s, they undertook a mammoth campaign, testing thousands of people to see if they would match Ryan and raising donations for the transplant.
The man who might save Ryan was located through the National Marrow Donor Program Registry, a computerized service that matches patients with potential donors. Ryan is fortunate because about 9,000 other patients nationwide are waiting to find compatible bone marrow donors to possibly cure their various maladies.
Because of potential legal and emotional entanglements, donors usually remain anonymous, Rogers said. In some cases, after successful procedures, the donors and patients eventually meet.
Ryan will begin testing on Monday and, if everything goes as planned, he will undergo chemotherapy to kill his own marrow in advance of the transplant on Aug. 2. His second birthday is Aug. 17.
The average cost of the transplant and hospital stay is $225,000, Stanik said, although the actual charges can vary, depending on the patient’s reaction to the transplant and possible complications.
Rogers said the family has some insurance, but they will be depending on donations to help pay the bills. Friends of Ryan, a group organized by Tracy Worthington, is taking donations through a special account: Parents Heart Assn., In Trust For Ryan, P.O. Box 779, Glendora, Calif. 91740.
The Worthingtons said all they can do at this point is put Ryan’s life in God’s hands.
“The Friends of Ryan have moved the earth,” Robert Worthington said as his son flirted with reporters and photographers at a press conference before they left for Minnesota. “Now it’s God’s turn to move the heavens.”
