7-Year-Old with Rare Disorder Searching for Mixed-Race Donor to Save His Life
Asaya Bullock desperately needs to find a bone-marrow mixed race donor match.
When Asaya Bullock was 8 months old, doctors told his mother Charline that her son was unlikely to live past the age of 2.
Asaya is now 7, but his health is precarious, and he desperately needs a bone marrow transplant from a very special kind of donor.
7-Year-Old with Rare Disease in Need of Bone Marrow from a Mixed-Race Donor to Live https://t.co/l5vuul7nq4— bethematch (@BeTheMatch) May 30, 2019
“It keeps on happening, and I don’t like it, and every time my sister wants to help, and she helps, but she just can’t.” Asaya Bullock
DEALING WITH A HARROWING DIAGNOSIS
Doctors diagnosed Asaya with IPEX syndrome, a condition in which the immune system attacks the body's own tissues and organs.
Although Asaya survived the early death predicted for him, he lives with constant crippling pain and is vulnerable to opportunistic infections such as the flu. He needs weekly immunoglobulin replacement therapy treatments to help him fight these infections.
Asaya's story is truly powerful and it is so critical that we make the donor pool more diverse to ensure equal outcomes for all. For those inspired to join: https://t.co/IZ9ilBnQnO . 💙💚-Sydney— bethematch (@BeTheMatch) May 29, 2019
Although there are over 8 million donors in the Be a Match registry, less than 600, 000 are African American
HOPE FOR ASAYA
There is hope for Asaya in a bone marrow transplant, but the always-difficult search for a donor is complicated by his unique ancestry.
Asaya's dad is African American and his mom Charline is West Indian Caribbean, and they haven't been able to find a viable genetic match.
APPEALING FOR A SPECIAL DONOR
The Bullocks, who have been searching for a bone marrow donor with the help of the Icla da Silva Foundation, are appealing for people of mixed race to register with Be the Match in the hopes of finding a match for Asaya.
7-year-old Asaya Bullock of Parkchester, NY needs a bone marrow transplant, but due to the nature of his rare disease, the donation can't come from just anyone. https://t.co/SmoFUInF41— WLS-AM 890 (@wlsam890) May 29, 2019
THE SHORTAGE OF AFRICAN AMERICAN DONORS
The Bullocks are facing the same difficulty as many other people of African American descent: A shortage of donors.
Although there are over 8 million donors in the Be a Match registry, less than 600, 000 are African American, so there is a smaller pool to draw matches from than white donor seekers.
“There’s only one in a million that you just might be called to be a match. At least you know in your heart if you do get called and you are a match for somebody you saved a life. We all got to look out for one another,” Charline said.
Maybe one of the people reading this article could be a match for Asaya, or another sick child fighting for his or her life..
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Three-year-old Skye finally got to meet Hayden, the woman who miraculously saved her life as her bone marrow donor, while serving in her wedding as the flower girl. Skye came to the ceremony bearing gifts, including a gold locket for the bride that read, “This heart beats with yours.” 😭💕 Click the link in our bio for the full story. #theknot 📷: @markbroadwayphoto | Videographer: @joshua.bane | Bride: @haydenshelby27 | Hair & Makeup: @teamdeedeehm
A DONOR MEETS THE CHILD SHE SAVED
Hayden Hatfield Ryals, 26, was a bone marrow donor, and her selflessness saved a precious life.
Skye was diagnosed with juvenile myelomonocytic leukemia before her first birthday, and her only hope of survival was to find a compatible bone marrow donor,
The compatible donor turned out to be Hayden, and a year after the donation, the Be the Match organization allowed her to contact her recipient.
The two fell in love with each other, and Hayden asked Skye to be a part of the most important day of her life - her wedding.
Three-year-old Skye was the flower girl at Hayden's wedding - a special day neither will ever forget.
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