Kitsap County boy with sickle-cell anemia needs bone-marrow match

SEABECK, Kitsap County —

The 7-year-old kicks and jumps in a joyful, improvisational dance.

"The last time, it was just like this," Thomas Oliver says of his son, Zyreal Oliver-Chandler. "One hour later he was flat in bed, unconscious with a heart rate of 200."

Zyreal has sickle-cell anemia and can go from healthy to critically ill in minutes. The only remedy, says his doctor, is a bone-marrow transplant.

But because Zyreal is African American, it's difficult to find a matching donor.

African Americans account for about 550,000 of the 7 million volunteers on the National Marrow Donor Program registry, Asians even fewer, Native Americans about 83,000 and Hispanics 690,000. The remainder are mixed race or Caucasian.

Bone marrow, like eye and skin color, is an inherited trait, so it's easier finding a match among the same race, says Anita Hanning, supervisor of the bone-marrow donor program for the Puget Sound Blood Center.

Through June 22, the national Be the Match Marrowthon, sponsored by a $330,000 grant, waives the $52 registration fee usually charged to get on the registry. But donors of color are so needed that the fee is waived indefinitely, Hanning says.

Oliver and his partner, Jeffrey Chandler, adopted Zyreal when he was only 7 months old, knowing the infant had sickle-cell anemia.

Oliver and Chandler say they fell in love with Zyreal when they first saw him — a wide-eyed baby who easily fell asleep in their arms.

"He had a round head just like Charlie Brown," Oliver says.

They already had one adopted son, Cody Oaks, a Western Washington University student, who, like Zyreal, was once considered hard to place, Oliver says.

A photo of the two dads and two sons is on the wall in the living room of their home, not far from fat block letters that spell out FAMILY.

In Zyreal's room near Seabeck, he chatters happily about all the books he's read and Blueie, a stuffed elephant.

"I found Blueie walking down the hall at Mary Bridge (Children's Hospital in Tacoma) looking for somebody to love him," Oliver says as Zyreal tosses Blueie into the air.

Zyreal says little when asked about his many hospital stays. And his two fathers — his name for Oliver is Poppy; and Chandler, Daddy — — hope he'll someday be free from pain and medical procedures.

Extreme pain

Sickle-cell anemia causes various cells of the body to die, and in Zyreal's case results in sudden extreme and lasting pain. His attacks affect his bone cells, which slough off and lodge in his lungs, causing acute chest syndrome, Oliver explains.

Zyreal has had several of those incidents and it triggered a very aggressive form of pneumonia that is hard to treat.

"It predicts more episodes in the future," says Dr. Robert Irwin, his pediatric hematologist. "It's a marker that he has a very severe disease."

Zyreal gets frequent blood transfusions, which help control the disease short-term. Not only are the attacks so painful they usually have to be controlled with morphine, they put him at risk of stroke or other organ failure, Irwin says.

Family friends at Kitsap Unitarian Universalist Church have contributed money to the Zyreal Transplant Fund at Kitsap Community Credit Union. And one friend, Jennifer Stowell, is hosting a fundraiser at her home in July.

While insurance covers the cost of the transplant — should a donor be found — it doesn't cover many of the miscellaneous expenses during the months the family would stay in Seattle.

Spunky kid

"I've known Zyreal since Thomas and Jeffrey first adopted him," Stowell says.

"Zyreal has always been such a high-energy, spunky, guy but without their love and support he wouldn't have much of a chance. You see something like that and you do what you can to help."

Zyreal's best chance to find a marrow match would be from a sibling. He has five half-siblings from a troubled mother who relinquished him when she learned of his illness, Oliver says.

Her whereabouts or those of the siblings are unknown.

"Finding a good match is one of our biggest hurdles," Irwin says. "In Zyreal's case, [with a transplant] there a good chance of eliminating his sickle-cell disease."

Nancy Bartley: 206-464-8522 or nbartley@seattletimes.com