An Inglewood family shared their story Wednesday to raise awareness of the lack of diversity in the national bone marrow donor registry.
Kylie and Kimora Van Sciver, who are both diagnosed with sickle cell anemia, are among the one in every 365 Black or African-American births affected by the disease, according to the Centers for Disease Control and Prevention.
Lately, her hospital room at Children’s Hospital of Los Angeles has been Kimora’s home away from home.
“I’ve been at the hospital for two days now, and I’m not feeling my best,” said the seventh grader.
Her often debilitating pain is caused by her sickle cell anemia.
“Right now, its my mid-thigh all the way down to my toes,” said Kimora. “It makes your blood into crescent moons, which means you’re having a sickle cell crisis.”
Without a much needed bone marrow match, Kimora’s mother fears, the disease could be deadly.
“No parent should have to see their child suffer,” said their mother Destiny Van Sciver.
Kimora’s younger sister Kylie, 8, was also diagnosed with sickle cell disease this year, according to Van Sciver.
“We are in this position waiting for our donor so we can have a life beyond disease,” she said.
Sickle cell disease affects about 100,000 Americans, according to the CDC. It impacts the Black or African American community in approximately 1 in every 365 births.
Bone marrow matches are largely found through same ethnic backgrounds, which makes finding a match for the sisters a challenge. The pandemic halted in-person donor events, which has put additional strains on donor recruitment efforts.
“Only six percent in the database are black, which is is problem especially for Kimora and Kylie,” said Amy Roseman of DKMS, the non profit working to find that match.
But, the sisters would only need one match to save both their lives.
“I really hope that all you guys watching, I just really want get this bone marrow transplant to live life to the fullest.
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