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Kitsap boy battling sickle cell disease

6-year-old in need of bone marrow donor.

Zyreal Oliver-Chandler looks and acts like an average 6-year-old.

The bouncing boy loves to play soccer, swim and says his favorite subject at school is recess.

But Zyreal has spent a large portion of his short life in and out of hospitals battling sickle cell disease.

Thomas Oliver and Jeffrey Chandler, of Seabeck, adopted Zyreal when he was 7 1/2 months old. The pair knew he had sickle cell, but did some research and decided they could be great parents to the boy.

“They asked us over and over and over again, ‘Do you know what you’re getting into?’” Oliver said.

Chandler said he and Oliver take Zyreal to Mary Bridge Children’s Hospital in Tacoma at least once a month for treatments and checkups.

“If things are perfect, he goes to the doctor once a month, but things are never perfect,” Chandler said.

Oliver said sickle cell disease is genetic and 8 percent of African Americans have the disease. When he is stressed, Zyreal’s red blood cells change from round-shaped to sickle-shaped and cannot pass through his blood vessels, causing blockages which can damage tissue.

“The first episode that he had a bone died, so it looked like a broken bone,” Oliver said.

Oliver said sickle cell patients also are susceptible to infections.

“If he gets a fever of 101, we have to take him to the emergency room,” Chandler said.

Oliver said sickle cell patients also have acute chest syndrome (ACS). With ACS, the blood cells migrate to and fill up the lungs, according to Oliver. Zyreal has had two bouts of ACS.

“The first time we very near lost him. Unfortunately, Zyreal seems to be prone to ACS,” Oliver said. “ACS is like a stroke — once you have one, you’re more likely to die from the next one.”

Zyreal’s last bout with ACS was last fall. Oliver says his son is like a diamond — he’s tough as steel, but can break easily.

“The last time he had ACS he was literally jumping around the living room like he is now and one hour later he was down,” Oliver said. “When you’re not having an episode, you look like the picture of health.”

Doctors told Oliver and Chandler their son needed a bone marrow transplant to get rid of the sickle cell disease, so they met with the Seattle Cancer Care Alliance and began searching for a donor.

“It’s very difficult to find people to donate to African Americans,” Chandler said.

People are most likely to find compatible donors within their own racial and ethnic groups, according to Puget Sound Blood Center. Seventy-five percent of the National Marrow Donor Program registered participants are Caucasian, while African Americans only make up 8 percent of the registry.

“Only 17 percent of people who volunteer ever get called to donate,” Oliver said. “We’ve heard from donors who said it’s a wonderful experience and they would do it again at the drop of a hat.”

To become a bone marrow donor, a cheek skin cell swab sample is taken and tissue-typed. Puget Sound Blood Center said the tissue-typing costs $52 per donor, but the National Marrow Donor Program usually has funding available to reduce the cost to $25 per donor for Caucasians. Because the need to diversify the registry is critical, people of ethnic minorities can typically join the bone marrow registry free-of-charge.

If Zyreal is matched with a donor, the family will have to stay in Seattle for months. He will undergo three to four weeks of preparation for the transplant, have chemotherapy to kill his existing bone marrow, have the bone marrow transplant and then stay in isolation for one month.

He will not be allowed in public school for one year. Zyreal currently attends the Central Kitsap School District Montessori Program at Jackson Park Elementary School in Bremerton.

He also has to be in a dust-free, germ-free environment and will be required to wear a mask when in public.

Chandler said their insurance will cover a large portion of the costs, but they still have to pay for some things on their own.

“We need between $11,000 and $12,000,” he said.

People can donate to the Zyreal Transplant Fund at Kitsap Credit Union. Donations also may be mailed to the fund at Kitsap Credit Union, P.O. Box 990 Bremerton, WA 98337.

For more information on becoming a bone marrow donor, contact the Puget Sound Blood Center located at 3230 NW Randall Way, Suite 101 in Silverdale or call the center at (360) 337-1985.

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