Girl's short life touched many
By Will Hoover
Advertiser Staff Writer
The short life of Ryan Ma — the adopted 17-month-old girl with a rare blood disorder who became the focus of numerous islandwide bone marrow drives — ended yesterday morning at Kapi'olani Medical Center for Women & Children.
In honor of the memory of Ryan Ma, the Friends of Ryan Ma will coordinate two more bone marrow donor registration drives, said Friends coordinator Audrey Fuga-Nakagawa. She said the drives are set for the following times and places: • 10 a.m. to 3 p.m. June 19 at Mililani Town Center. • 9 a.m to 1 p.m. June 27 at Kaimuki Christian Church. For more information, call the Hawai'i Bone Marrow Donor Registry at 547-6154.
It was not unexpected, said Sonhye Kim, associate pastor of Harris United Methodist Church, who had counseled the family since their ordeal began and was with them at the hospital.
In memory of Ryan Ma
"The doctors had said if they could find a match and she had the surgery, there would be a chance," said Kim, fighting back tears. "But, we were not lucky enough to find the match. Her health got really bad, and last week the doctors said it's too late — even if they find a match.
"So the family expected that she might go pretty soon."
Kim said the doctors suggested that the family allow the child to enjoy her remaining moments at home as much as possible. The child was taken off chemotherapy, which had only made her sicker, Kim said.
"I think she died in her mother's arms, at around 11:30 a.m.," Kim said. "Her mother kept holding the baby. And people kept coming in to see Ryan. She was wearing a dress, and she looked so peaceful. For such a long time she had been wearing a hospital gown and had tubes attached to her. And her family was so happy the dress they brought from China fit her."
Lise and Dickson Ma had adopted Ryan from a China orphanage when the girl was 11 months old. But less than a month after bringing Ryan to Hawai'i, she was diagnosed with hemophagocytic lymphohistiocytosis — an extremely rare blood disorder.
For months the child was in and out of the hospital. Several drives were launched in hopes of finding a donor who could furnish bone marrow for a transplant. Dozens of volunteers passed out fliers and held placards on street corners to inform motorists and pedestrians of the need and where they could go to register.
Renee Adaniya, donor program coordinator for the Hawai'i Bone Marrow Donor Registry, which is affiliated with St. Francis Medical Center, praised the public's response to the call.
"For the month of May we had 770 new donors registered," Adaniya said. "Our average is about 100 to 200 a month."
She said many of the new donors mentioned Ryan Ma when they registered. Adaniya said she was saddened when a match could not be found in time.
"We don't like to see this happen," she said. "So we'd like people to become educated about becoming a bone marrow donor and register early. That way, they can help other current patients and those in need in the future."
The registration process takes 10 to 15 minutes and requires the potential donor to take a finger stick blood test and fill out a registration form.
Because of Ryan, many people in Hawai'i have learned about the importance of registering to become bone marrow donors, Adaniya said. Also because of her, others might live, she added.
"We're hoping that will be her legacy," said Audrey Fuga-Nakagawa, who coordinated eight bone marrow registration drives for the Friends of Ryan Ma. "It's miraculous how this one little baby has touched so many people."
Ryan will be remembered fondly — even by those who never knew her.
"Ryan gave so much joy, even though she was suffering," Kim said.
"Although she lived such a short life, I think every moment was precious and meaningful."
Reach Will Hoover at 525-8038 or whoover@honoluluadvertiser.com.
