POMONA : Girl With Gene Disorder Needs Marrow Donor

Since infancy, 4-year-old Shafon Seeden has fought an extremely rare malady whose very name--mucopolysaccharidosis, type 6, maroteaux/lamy syndrome--is probably unpronounceable for the dark-eyed, Pomona preschooler. Doctors at County USC Medical Center say they’ve seen only two cases of the disorder in the past 20 years.

The genetic disorder causes a carbohydrate to accumulate in the body, resulting in bone disfigurement, organ swelling and congested lungs, doctors say. Lacking the enzyme to break down the carbohydrate, Shafon’s body could give out in 16 years.

But doctors are hoping a bone marrow transplant could prolong Shafon’s life. Two Los Angeles churches last weekend held donor drives for Shafon. They registered 35 potential donors, said Barbara Wilks of the American Red Cross.

Many more are needed. None of Shafon’s family members have blood plasma that matches the child’s. African Americans have a higher probability of matching, but they make up only 5% of the 1.2-million people registered nationwide with the Red Cross’ bone marrow program, Wilks said.

Donor information: (800) MARROW2.