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Saturday's marrow drive may save a life

Girl hoping to find a match

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POSTED: June 14, 2013 9:31 a.m.
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Saniyah Joseph, 8, needs bone marrow from a donor to help treat her aplastic anemia.

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Be the Match, an organization that connects patients who have life-threatening blood cancers with potential bone-marrow donors, will host a marrow drive to build awareness from 8:30-11:30 a.m. Saturday at the Historical Dorchester Academy in Midway.
“We want to educate people about donating bone marrow so all of our patients have a chance to be cured of their diseases,” said Jennifer Salah, Be the Match Southeastern recruitment and community development account executive.  “A lot of our patients can be cured if we find a person who matches their tissue type and is willing to donate marrow.”
The marrow drive Saturday is being held in honor of Saniyah Joseph, an 8-year-old girl who has aplastic anemia, a disease that affects her bone-marrow functions.
“People with aplastic anemia usually can’t live a normal life,” Salah said. “They usually feel tired often, can’t be as active as a normal person and have to get blood treatments often.”
At the marrow drive, people can join the Be the Match registry and possibly cure a patient like Saniyah from the disease, Salah said. The donors’ tissue types will be analyzed once they are added to the list.
“Tissue types are inherited, so patients are most likely to match people of their same race,” she said.
Be the Match has a donor registry of 10.5 million people, Salah said. But only 7 percent of its donors are of African-American descent, so they haven’t been able to find a match for Saniyah yet.  
“African-American patients have a harder time matching donors on our registry because we have so few African-Americans donating marrow,” Salah said. “That’s why we need to build awareness … so all of our patients have an equal chance of being cured.”
Saniyah has been waiting for a match since last fall when she was diagnosed with her disorder while living in Europe, where he father is stationed with the Army. Her mother, Selina Hargrove Joseph, grew up in Liberty County and went to Bradwell Institute. Saniyah’s maternal grandparents, Levan and Hattie Hargrove, still live in Liberty County.
“Saturday’s drive will be one of many drives we will host in hopes of finding a match for Saniyah,” said Betty McCray, friend and neighbor of the Hargrove family.
Several marrow drives have been conducted in Saniyah’s honor in Naples, Italy, and Stuttgart, Ramstein and Weisbanden, Germany. So far, there hasn’t been a match.  Since her diagnosis, the family has been split between continents.
“Saniyah’s mother had to take her to Virginia to be treated while her dad and brother stayed in Europe,” McCray said. “This has affected the family so much.”
Saniyah’s father now is stateside with her, and Saniyah’s mother has returned to work in Europe.
“Hopefully, they will all be able to reunite by the summer,” McCray said.
Saniyah’s father is trying to change his duty station so the family can be together where Saniyah needs treatment.
Saniyah can be cured of the disease if a match is found for her in the national marrow donor registry. Volunteers ages 18 to 44 can be added to the registry after a test is done at the marrow drive Saturday.  
“Becoming a donor is very simple, actually,” Salah said. “Since there is a lack of awareness, people don’t realize how easy it really is to save someone’s life.”
At the drive, a professional will swab the inside of the volunteer’s mouth, McCray said. This swab will be sent to a lab for DNA testing to see if it matches Saniyah’s tissue type or someone else’s on the national list of patients who need a marrow transplant.
“Even though the swab is free to the volunteer, it does cost $100 per swab for the DNA testing,” McCray said.
The volunteer can donate if they want, but it is not necessary to become a potential donor. Part of the reason the Be the Match coordinates marrow drives is to fundraise and build awareness for marrow donations, McCray said. Since the donors don’t pay anything for donating marrow, the tests and procedures are paid for by donations.
If a volunteer happens to be a match for Saniyah or for another patient, they will be contacted about the procedure.
“It is relatively painless to remove bone marrow,” Salah said. “It is just like the process of removing plasma … it really is simple to save someone’s life.”
More information about Saniyah can be found at http://www.bethematchfoundation.org/goto/TeamSaniyah, and more information about becoming a donor can be found at http://marrow.org.

 

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