Siblings with sickle cell disease searching for a donor match
CHARLESTON, S.C. (WCSC) - The parent of two children who are receiving care at MUSC in Charleston is spreading awareness about an inherited disorder that affects millions of people around the world.
Imagine finding out your first-born child has sickle cell disease. Now, imagine two years later, finding out your second born has the disease as well.
Flash forward 11 years, and the pair’s mother, Toni Yates, is looking for bone marrow, or blood stem cell, transplants for both of her children.
Yates said since her son, Dontrell, and daughter, Ashanti, were born, she’s been learning and spreading awareness about sickle cell disease.
“I just want them to be normal kids and live a healthy life. I mean, that’s all they talk about now is ‘oh, I can get the cure,’ and ‘when I get the cure,” Yates said.
Although Dontrell and Ashanti both have sickle cell disease, they have different symptoms.
The pair’s doctor at MUSC, Dr. Jennifer Jaroscak said Dontrell experiences strokes and neurological symptoms- his last stroke sending him to MUSC just days ago.
Ashanti, often experiencing episodes of extreme pain, from blockages in her veins.
Yates said these episodes are unpredictable- making it nearly impossible for the 11- and 13-year-olds to participate in typical kid activities.
“The biggest thing for both of them that they want to do is swim,” Yates said.
She said with sickle cell disease, blood vessels can get stuck in veins and cause chronic pain.
Cold pools can be a ‘no-go,’ because cold temperatures restrict the body, causing veins to tighten and contract.
“I’m the crazy mom that, when we do go places, that brings a little gauge, and I stick the terminator in the pool to see, ‘can they get in this water?” Yates said.
The family has recently found out that, of the over 10-million donors in the National Marrow Donor Program Database, neither Dontrell nor Ashanti has a match.
Dr. Jennifer Jaroscak said, for African American patients, this is unfortunately common. She said most matches come from the same ethnicity as the patient.
“Most people who have registered in the registry are Caucasian,” Dr. Jaroscak said.
She said there are a lot of patients with sickle cell whose lives could be saved by someone volunteering to donate bone marrow.
“The more diverse donors we have, the more likely we are to be able to find donors for all of our patients,” Dr. Jaroscak said.
Yates said, even if sharing this story doesn’t find a match for her children- she hopes it at least helps someone else by recruiting diverse donors.
“There could be another mother, in my situation, that might have two kids like me that need a cure, so maybe our story will help other people, and maybe it will cure both of my kids,” Yates said.
To see if you’re a match for Ashanti and Trell, or patients like them needing a match, you can text “ShantiandTrell” to 61474.
Joining is free, you just have to fill out an online form and request a kit be mailed to your home for a cheek swab. From there, you’ll be tested to see if you’re a match to anyone in the registry.
Be the Match officials said donating is similar to donating platelets.
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