Joshua Biyoyouwei, a 14-year-old in Gwinnett County, became paralyzed on the right side of his body from a stroke at only 18 months old due to sickle cell disease.
He’s endured a life of exhausting blood transfusions each month at a hospital. He misses school and other activities often taken for granted, like going to the grocery store with his mom.
A bone marrow transplant or blood stem cells could cure Biyoyouwei of his disease. After searching for a donor for years, the Lawrenceville teenager is turning to his community for help.
“It would change Joshua’s life a whole lot, meaning he wouldn’t have to get up every month to go in to get blood transfusions done,” said his mother, Vera Johnson-Tokpah. “... He just wants to be a regular boy.”
Be The Match, the nation’s marrow donation program, will hold a drive-thru swabbing event from 10 a.m.-1 p.m. on Saturday at Rhodes Jordan Park in Lawrenceville. People who show up will join the donation registry and have their cheek swabbed to see if they’re a match for Biyoyouwei or others in need.
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Sickle cell is an inherited blood disorder that causes red blood cells to become crescent-shaped, like a sickle, making it more difficult for them to circulate through blood vessels, said Shakeira Wesley, Atlanta’s community outreach manager for Be The Match.
A stem cell or bone marrow transplant helps the patient’s body produce healthy red blood cells to replace the sickle cells. The donation of stem cells is similar to donating plasma, Wesley said, while donating bone marrow is a more invasive procedure.
To be eligible to donate, a person must have the same human leukocyte antigen type as the person receiving the donation, Wesley said.
There are thousands of different HLA types, Wesley said, making it difficult for someone to find a donor. There’s only a 25% chance that someone in need of a donation shares the same HLA type as a family member, she said.
People are more likely to share the same genetic makeup needed for a donation if they are the same race. Black patients only have a 29% chance of finding a match on Be The Match’s registry, compared to 79% of white patients, Wesley said.
“That’s why we are looking for more Black people to join the registry, because it literally takes a Black person to save a Black person’s life,” Wesley said. “We need to have more of an ethnically diverse registry so that all of our patients have the same chance of finding a match.”
Be The Match has partnered with Atlanta and Gwinnett County to declare July 10-17 as “Cheek Week” to support the need for more diversity on the nonprofit’s registry.
Gwinnett County Commissioner Marlene Fosque sponsored a proclamation to declare July as African American Bone Marrow Awareness Month to support Biyoyouwei’s search.
A sports junkie, Biyoyouwei had the opportunity to chat with the Milwaukee Bucks’ Jrue Holiday. The basketball player, who has a close friend with sickle cell, helped spread the word about the teenager’s need.
Biyoyouwei, who will start at Discovery High School this year, developed a learning disability from his stroke and still has trouble using the right side of his body. The transplant wouldn’t reverse the damage from his stroke, but it could prevent him from having another one.
“Our faith in God has kept us hopeful and Joshua himself,” Johnson-Tokpah said. “Joshua is such a loving boy.”
BE THE MATCH
When: Saturday, 10 a.m. to 1 p.m.
Where: Rhodes Jordan Park, 100 E. Crogan St., Lawrenceville
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