SAN DIEGO (KGTV) — San Diego and California, along with five other states, are searching for a bone marrow match for three-year-old Kiri, and his family is racing against time to find a donor.
Kiri was diagnosed at birth with Cerebral Adrenoleukodystrophy, a rare genetic disorder that impacts the brain. They say he had shown no symptoms or progression until this summer, when he went in for a routine MRI, and doctors spotted disease progression.
One of the main forms of treatment is stem cell therapy through bone marrow transplants, but no one from Kiri's family or the national bone marrow database has been identified as a match.
“It’s been really difficult,” Staci Birkel, Kiri’s Aunt said. “... Basically, if we don't find a match - he would have to do gene therapy which is very expensive and very hard for Kiri.”
The boy's extended family is now searching desperately for a match, hosting events up and down California’s coast to incentivize people to get tested to see if they could be a match. They’ve had friends and extended family step in to get tested.
While they’ve had many friends and communities test across California, Nevada, Arizona, Utah and New York, they say they still haven’t found a match.
“It’s kind of blowing up on Social media,” Birkel said. “We’re very grateful.”
Kiri’s family is racing against the clock. Birkel said that a doctor had recommended a bone marrow transplant by early September, which means they need to find a match by Thursday.
Community members who want to help can access testing on this website to get a test sent directly to their home.
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