Girl needs bone
marrow miracleIsle bone marrow drives hope
to find a match for the infant
Sixteen-month-old Ryan Ma needs a bone marrow transplant to fight an extremely rare disease.
COURTESY PHOTO
Sixteen-month-old Ryan Ma needs a bone marrow transplant to fight a rare blood disorder.
The adopted Chinese infant has been at Kapiolani Medical Center for Women & Children since the end of November.
Daughter of Dickson and Lise Ditzel-Ma, both with the U.S. Army Corps of Engineers, Ryan has been diagnosed with hemophagocytic lympohistiocytosis, a disorder in which white blood cells proliferate and attack organs and tissue.
She is only the 114th person in the world to be treated for the disease with current medical procedures, including chemotherapy and steroids, Ditzel-Ma said. "They're giving her every medicine they know of to treat it."
The Hawaii Bone Marrow Donor Registry will hold a series of bone marrow drives starting Sunday to help Ryan and other patients waiting for a matched donor, said Roy Yonashiro, donor recruitment coordinator.
He said Ryan has no way to fight infections or diseases.
Seven-year-old Kailee Wells, of Albuquerque, N.M., is another adopted child from China who needs a bone marrow donor, Yonashiro said. Kailee has severe aplastic anemia, and her mother, Linda Wells, "has been going around the world with pleas for help for her daughter and the national registry, asking people to sign up," he said.
Because Ryan and Kailee are adopted, with no biological relatives, it is hoped the Chinese population will respond to the plea for donors.
"Chinese are the most likely candidates for these girls, but someone of a different race may be a match," said Audrey Suga-Nakagawa, community relations director for Maluhia and Leahi Hospitals.
She and her husband, Raymond, traveled with Ryan's parents and two other couples to bring back daughters from China in November. They made arrangements through the Hawaii International Child agency to adopt the children from Changsha in Hunan province, she said. "Usually the babies are very healthy and do very well."
But Ryan became ill about three weeks after arrival with Epstein-Barr virus, known for causing mononucleosis and other infections. It was believed to trigger the rare disorder, Yonashiro said.
Ditzel-Ma said the baby returned home from the hospital for three weeks in March and "was doing very well," then her fever returned and she was readmitted March 31.
"They're thinking her cells are probably getting resistant to the medicine. ... Things are still out of whack," the child's mother said.
Suga-Nakagawa said her adopted daughter, Kori, and the others are fine. She also has a 6-year-old daughter, Lauren, adopted from China through the same agency.
Ditzel-Ma, a project manager at the Corps of Engineers, and her husband, deputy resident engineer, also have a biological son, Jaryd, who is almost 5.
"We're so tired already," she said of her daughter's illness. "It's been so long. The poor thing just came back in November and was with us only a couple weeks before she started getting sick. She has been through more than any adult could dream of in their lifetime."
Her husband's family is Chinese, and they have a lot of friends who are encouraging people to register as bone marrow donors for a possible match, Ditzel-Ma said. "All we need is one person. If we could just find that one person."
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Hawaii Registry searching
for matches to save lives
Bone marrow donors do not give up anything because bone marrow regenerates, and they could save someone's life, said Roy Yonashiro, donor recruitment coordinator at the Hawaii Bone Marrow Donor Registry.
Asians, Hawaiians, Pacific Islanders and people of mixed ancestry are needed especially because of fewer people in those groups on the Hawaii and National registries.
The Hawaii Registry will conduct a donor drive from 8:20 a.m. to 1 p.m. Sunday at Kapiolani Park during the National Kidney Foundation of Hawaii-Gift of Life Walk.
Others will be 10 a.m. to 3 p.m. May 8 at Harris United Methodist Church, 11 a.m. to 3 p.m. May 15 at Pearlridge uptown and 7 a.m. to 2 p.m. May 22 at Liliuokalani Park in Hilo during the Hilo Fire Department's Fun Run Race observing Emergency Medical Services Week.
Other drives will be scheduled on Oahu and Maui.
Donors must be 18 to 60 years old and in general good health. They will be asked to complete a registration form and provide a small blood sample to compare with tissue types of thousands of patients worldwide searching for a matching bone marrow donor.
More information about the donor process and the Hawaii Registry, at St. Francis Medical Center, can be obtained by calling 547-6154 or toll-free 877-HI-DONOR (443-6667).
