7-Year-Old with Rare Disease in Need of Bone Marrow from a Mixed-Race Donor to Live
Asaya Bullock was not expected to live past 2 years old, but needs help to live a healthy life
A 7-year-old with a rare disease is looking for his perfect match.
Asaya Bullock, from the Bronx, was not expected to live past age 2. He was diagnosed at 8 months old with IPEX syndrome, a rare condition that causes the immune system to malfunction and attack the body’s own tissues and organs.
Despite the dire prognosis, Bullock made it to 7 years old, but he often suffers from crippling pain and lengthy illnesses — when he had the flu in 2018, it lasted for six weeks, leading him to miss a significant amount of school. He also needs weekly immunoglobulin replacement therapy treatments to help him fight infections.
“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,” Bullock told News 12.
The Bullocks have been searching for years for a bone marrow donor for Asaya, with the help of the Icla da Silva Foundation. A transplant would help him live a more normal, healthier life. But because of his unique background — his father is African American and Charline is West Indian Caribbean — they haven’t been able to find a match.
The family is encouraging people to join Be the Match, a national registry of people that connects them to people in need. They hope that they’ll eventually find a donor who can help Asaya.
His mother, Charline, said that she tells Asaya to keep calm during the day, and let out his pain when he’s in the bathroom.
“I tell him everything is going to be okay, we’ll be alright, we’re going to get through this,” she said. “We are family, we always go through this as a family, and when you go to in the shower to bathe you scream your head off.”
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“There’s only one in a million that you just might be called to be a match,” Charline told Good Morning America. “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.”
“It’ll mean very much,” Asaya told News 12.