7-year-old with rare disease needs donor of mixed race to save his life

(NEW YORK) — A New York family is on a time-sensitive search for a bone marrow donor of a specific ethnicity to save their son’s life.

Asaya Bullock of Parkchester was diagnosed at birth with IPEX syndrome, a rare autoimmune disease.

In many cases, the disorder can be life-threatening.

“It’s like a miracle that Asaya is still alive because the doctors only gave him two years to live,” his mother, Charline Bullock, told ABC News’ Good Morning America. “He was sick a lot and as [his] parents, we didn’t know what was wrong with him.”

Over the years, Asaya has suffered from memory loss, stomach issues, body aches and joint pain.

In his spare time, the 7-year-old Boy Scout loves karate and playing with his younger sister. Asaya is currently in school but quickly gets fatigued due to his compromised immune system.

The only cure for IPEX syndrome is a bone marrow transplant from a matching donor.

Bullock said her son has been on the Be The Match registry, which pairs patients with a viable donor, for most of his life.

However, Asaya’s father is African-American and his mother is Caribbean, making it difficult for him to find the right match since the registry is not representative of his ethnicity and ancestry.

Bullock is hoping people of the same ethnicity read about his story and register.

“I would tell them, ‘You’re saving a life.’ There’s only one in a million that you just might be called to be a match,” she said. “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.”

According to Be The Match, the more genetically unique a person is the lower the chance of finding a match.

The Icla da Silva Foundation, the largest recruitment center for Be The Match, recruits donors and provides support services to patients.

Airam da Silva, the foundation’s president, said he met Asaya more than five years ago when his family asked for help finding a match.

“There is a blood cancer diagnosis every four minutes in the U.S. and each one of us could be the cure to save a life,” da Silva told GMA. “We have to find them and together we can.”

Anyone who is between the ages of 18 and 44 can register with Be The Match, and it’s free to join, according to the organization.

Visit Be The Match to learn more about becoming a donor.

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