Be The Match: 7-year-old from Parkchester with rare disease seeks bone marrow donor

Posted: Updated:
PARKCHESTER -

A 7-year-old from Parkchester is searching for a hero.

Asaya Bullock has a rare disease and needs a bone marrow transplant.

Bullock has a rare autoimmune disease called Ipex Syndrome. The disease causes skin breakouts and extreme pain.

"As a mother you have to keep calm and tell him everything is going to be OK, you’re going to get through this. When you go into the shower you scream your head off,” says his motherCharline Bullock.

She tells News 12 her little boy wasn't expected to live more than a few years, but he is a survivor.

Despite his feats, he still needs a bone marrow transplant, so he can have as much of a normal life as possible. 

His mom says Asaya has missed a lot of days of school and struggles with day-to-day activities. She says a cold can last longer than a month, with the pain crippling.

Be The Match is a registry matching people like Asaya with a donor. 

His mother says it just takes a cotton swab to sign up and then an agreement to go forward with the transplant if there is a match.

"I want him to do everything he wants to do without sitting home saying, ‘I don’t feel like it or I’m tired,’” says Bullock.

She says she wants him to live a full and long life, even one day getting married.

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