‘Time is critical’: Family searches for bone marrow donor for 3-year-old with aggressive brain disease

SALT LAKE CITY — A family is asking for help from the community to find a bone marrow donor who could save the life of their 3-year-old, who was diagnosed with a rare, aggressive brain disease.

Jazmynn Pok and Anthony Duke-Rosati said time is of the essence in finding a donor for their son, Kiri, who’s diagnosed with cerebral ALD — a disease that’s fatal without treatment.

“Cerebral ALD, a rare, aggressive brain disease that attacks healthy children without mercy. It begins by silently destroying the brain — stealing speech, movement, and vision — until the body shuts down completely,” Pok and Duke-Rosati said on their website, Hopeforkiri.org. “Without your help in finding a donor match, Kiri could start losing critical functions within months, and his life expectancy without a match is just two to four years. We hope you will help us find a match soon.”

Pok and Duke-Rosati said they only have a couple of weeks to find a bone marrow donor; Kiri’s doctor said treatment must begin by Sept. 8.

Kiri’s disease is incurable, but a bone marrow transplant would stop the disease from progressing and prevent brain damage, Pok and Duke-Rosati said.

“(A Bone marrow transplant) replaces unhealthy blood-forming cells with healthy ones, allowing the body to protect against additional complications,” the parents said. “Although the transplant cannot reverse existing damage, it plays a vital role in preventing further progression.”

How you can help

According to Kiri’s website, potential matching bone marrow donors are identified through a global registry. The family encouraged everyone to join the registry, although to be a match for Kiri, a donor must be between 18 and 40 years old. The family also said the closest match would likely be someone with “partial Cambodian and/or Italian ancestry.”

Everyone who joins the registry will be mailed a test kit that they can do at home, which will determine if somebody is a match for Kiri or anybody else waiting for a life-saving transplant.

Test kits can also be picked up at a wide array of local businesses across the Salt Lake Valley. More information on where to pick up a test kit can be found on Kiri’s website.

For someone who is selected to donate bone marrow, Pok and Duke-Rosati said the process is pretty easy: Doctors use a needle to collect marrow from the donor’s pelvic bone under anesthesia. Donors can expect some soreness for a few days after the procedure, but most people feel normal after a couple days, the website states.

Kiri’s family also created a *GoFundMe to help with coming medical expenses.

Kiri’s journey

When Kiri was born in March of 2022, he was given all the procedural tests for newborns. One test revealed he had a gene mutation that put him at high risk for ALD.

“While we felt very fortunate of this mutation discovery through newborn screening, we nevertheless did not expect it to develop into the severe situation we are facing today,” Pok and Duke-Rosati said.

Kiri’s diagnosis hit close to home for the West Valley City Fire Department, too.

“One of our own, Firefighter Rosati, is facing every parent’s worst nightmare. His son, Kiri, has Cerebral ALD — a rare and aggressive brain disease that is fatal without a bone marrow transplant,” the fire department announced on Monday.

Those at the fire department also urged the community to join the donation registry.

Related: Living donor could save KSL team member’s life — here’s how to help

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