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The Icla da Silva Foundation
Phone: (646) 256-0027
New York (March 22, 2019) –7-year-old Asaya Bullock of Parkchester, NY is suffering from a rare autoimmune disease called IPEX syndrome. His only cure is bone marrow transplant from a matching donor.
7 Years Is A Long Time Waiting
March of 2019 marked the 7th anniversary of Asaya's diagnosis. His family has spent the last seven years searching for a matching donor, but there is still no match for him.
People like Asaya, who need a life-saving bone marrow or stem cell transplant, search the Be The Match donor registry for a lifesaving match. They search for a donor who shares the same ethnicity and ancestry. Since Asaya's father Vincent is African American, and his mother Charlene is of Caribbean descent, they are having a difficult time finding a match for Asaya.
The odds are not in his favor.
White patients have a 77% chance of finding a match on the Be The Match registry. Most African American patients only have a 23% chance of finding a matching donor. The more genetically unique a patient is, like Asaya, the lower their chances of finding a match.
Why Can't they Find A Matching Donor?
Unfortunately for Asaya, the difficulty in finding a matching bone marrow donor comes down to two issues:
#1 Black people have a highly mixed genetic heritage. This is due to a shameful history of forced migrations imposed by slavery and colonialism. It is more difficult to find a match.
#2 Black people are dramatically underrepresented on the registry. It is difficult to find a match because there are far fewer Black people included on the donor registry than White people.
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In fact, all minorities are underrepresented on the registry. The reasons are numerous. They include language barriers, cultural misconceptions, misinformation regarding procedures, even fear of doctors and hospitals. They all play a role.
As a result, each has a lower chance of finding a potential match because of their ethnicity. Latinos only have a 46% chance, Asians 41%, many mixed-race people have less than a 15% chance of finding a matching donor.
The Bullocks became aware of the challenges in finding a match for their son very early.
They tried to take matters into their own hands. Soon after their son's diagnosis, they decided to grow their family. They gave birth to a beautiful baby girl, and they named her Anaya. They had hoped to use their daughter's cord blood as a potential cure for their son. Although Anaya's cord blood was a 70% match for her brother, his body rejected the cells. The transplant did not work.
What's Are the Next Steps?
The only way to increase the chances of finding a match is to get more people to include themselves on the registry.
If you are a person with a diverse ethnic origin,
#1 Include yourself on the registry and agree to donate if you match a patient.
#2 Talk to your friends and family about also joining the registry.
Anyone between the ages of 18–44 can join and donate their stem cells. Joining the registry online only takes a few minutes using this link - https://join.bethematch.org/Swab4Bret
(WE ARE HAPPY TO CREATE A LINK SPECIFIC TO YOUR PAPER – WE CAN REPORT SUCCESS TO YOU FOR A FOLLOW UP)
But I'm Afraid
70% of all transplants use the PBSC method (peripheral blood stem cell donation) to donate stem cells. This is very similar to giving plasma. If you match a patient in need, you may be able to donate your stem cells and save someone's life in the time between breakfast and lunch.
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The remaining 30% of donations occur during a surgical procedure which takes place in an operating room. The donor is given anesthesia, feels no pain, and usually goes home the same day.
A doctor determines which donation process is best for the patient.
But the Cost, and My Insurance
There is no cost, and they don't utilize your insurance. Everything is taken care of by Be The Match. Any medical exams, testing, and the procedure are all handled by Be The Match. They even offer to have a car take you to the hospital for the donation.
Be The Match has the largest, most diverse registry of potential donors in the world, but in 7 years, there is still no match for Asaya.
Help us find his match.
You can join the registry here https://join.bethematch.org/Swab4Bret, and please share this story with your friends and family, someone's cure may literally be inside of them.
About Icla da Silva
The Icla da Silva Foundation saves lives by recruiting bone marrow donors and provides support services to children and adults with leukemia and other diseases treatable by marrow transplants. Since inception, the Foundation has registered over 500,000 potential bone marrow donors, facilitated more than 700 bone marrow transplants. The Foundation was created in memory of a 13-year-old Brazilian girl named Icla da Silva. After two years of fighting leukemia, Icla passed away in New York City, where she came hoping to receive a life-saving bone marrow transplant. The young girl never found a matching donor. The Icla da Silva Foundation is 501(c)3 nonprofit.
Icla da Silva is the largest recruitment center for the Be The Match donor registry.
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