NEW YORK (WCBS 880) — A 7-year-old boy from the Bronx is looking for a hero.
As WCBS 880’s Sean Adams learned in this week’s Stories from Main Street, Asaya Bullock is a bubbly, fun 7-year-old who loves video games and playing with his siblings.
But Asaya isn’t like most children his age and there’s many things he can’t do.
The 7-year-old from Parkchester has a rare autoimmune disease called IPEX syndrome and was diagnosed when he was just 9-months-old.
“They only gave him two years to live,” said mom Charlene Bullock. “What IPEX does, it shuts down the immune system, which means that his heart could fail, his lungs could fail.”
She notes that the disease also causes a host of complications.
“There’s just ‘mommy, here hurts, there hurts, mommy I’m itchy.’ So, it’s always something,” she said.
His family has been struggling his whole life in search of a bone marrow donor to help rebuild his immune system, but the family’s unique ancestry has been difficult to match.
Unfortunately for Asaya, another huge setback is the fact that black people are dramatically underrepresented on the donor registry.
“As black people, West Indian, Caribbean, African-American, we do not sign up to do bone marrow transplants,” Charlene explains.
The Bullocks tried to take matters into their own hands and grew their family soon after they learned about their son’s diagnosis.
They gave birth to a baby girl, whom they named Anaya, and had hoped to use the umbilical cord blood as a potential cure for Asaya.
But, Anaya’s cord blood was only a 70% match for her brother and his body rejected the cells.
Now, on the seven-year anniversary if Asaya’s diagnosis, they’re urging people to sign up to become a donor.
“Right now, we’re just hoping for a little bit more black people in the registry. That would be nice,” Charlene said.
Anyone between the ages of 18 and 44 can join the registry. Joining the registry online only takes a few minutes and only requires a cheek swab. To find out how you can become a donor visit BeTheMatch.org.
“Become a lifesaver,” said Asaya’s father, Vincent Bullock. “Because that's what it's all about, you’re saving a life and you’re saving kids, you’re saving teenagers. You’re saving somebody's life.”