A community springs up to help a Utah preschooler who needs a bone marrow transplant

South Jordan • Kiri Duke-Rosati wrapped one hand around his father’s neck, and shouted into the microphone as loud as his 3½-year-old lungs would let him: “Play ball!”

Kiri’s appearance with his family at Wednesday night’s Salt Lake Bees game in South Jordan was one of six events held that day as part of a campaign mobilized to find a donor whose bone marrow can slow the progression of Kiri’s rare condition.

The campaign has grown into a community, made up of thousands of people who have signed up for a national bone marrow registry — and dozens of businesses and volunteers who have worked to gather people’s DNA samples to find a match for Kiri.

For Kiri’s parents, Jazmynn Pok and Anthony Duke-Rosati, it’s been an “emotional rollercoaster” since July 28, when Kiri was diagnosed with cerebral adrenoleukodystrophy, or cerebral ALD, an aggressive brain disease most commonly found in young boys.

The family’s “big push” to find a donor for Kiri, Duke-Rosati said, started on Aug. 1 — and has enlisted grandparents, aunts and uncles from both sides of Kiri’s family.

“The family has been incredible,” Duke-Rosati said. “We got this horrible news, and rather than it being heavy and instead of everyone mourning, everyone sprang into action, and you see this huge campaign.”

In 20 days, the nonprofit National Marrow Donor Program (NMDP) received around 10,000 donor applications from several states, according to Kevin Mechenbier, the company’s Colorado/Utah account manager.

Having so many people sign up for the national registry made Duke-Rosati feel “incredible,” he said. As the family continues to search for a match for Kiri, he said his son’s legacy is in the community response and the number of people who have registered.

Hope in numbers

The National Marrow Donor Program has 9 million people in the U.S. on its registry — and finding a match among those millions, Mechenbier said, is Kiri’s only hope to stop the progression of his cerebral ALD.

“Kiri’s family is working to get as many people as they can on the registry,” Mechenbier said.

Anyone from 18 to 40 years old can donate. There’s a particular focus on donors of mixed ethnic backgrounds, “because usually a donor comes from a similar ethnic background as the patient,” Mechenbier said.

Duke-Rosati’s roots are in Europe. Kiri’s mom, Jazmynn Pok, is of Cambodian heritage.

“When you introduce the ethnicity component, it makes it more difficult to find a match,” Pok said. She recalled an acquaintance, a white man, who needed a bone marrow transplant and found nearly 30 matches in the NMDP registry. She said the family expected to find a match for Kiri sooner, and didn’t think they would need to schedule events for the campaign in late August.

Mechenbier said that “75% of the time, the patient does not have a matching donor in their family. So, even though Kiri has two siblings, they need to go for a match from the registry.”

Though they’re focused on finding a match for Kiri, the family also is broadcasting the need for people to sign up for the registry. The thousands who get swabbed may not be a match for Kiri, Duke-Rosati said, but they could match someone else.

If someone’s best match is outside the U.S., Mechenbier said in an email, the organization works to get a donor’s cells transported to the U.S. — and vice versa.

Mechembier said the community response is something “we have never seen before. … [It] is a combination of the effort that they put in, which is unbelievable, but also just the response from the community has also been unbelievable.”

Spreading the word

Kiri and his parents appeared at two events Wednesday: A University of Utah lacrosse game in Salt Lake City, and the Bees game. The same day, a Park City restaurant gave away meal vouchers to customers who signed up for the registry, and other family members attended three other events.

Together, the six events drew 455 people to register as potential donors, according to Aubrey Woodard, a representative of NMDP.

Ravath Pok, Kiri’s grandfather, said the drive was chaotic at first, but the family learned within days how to organize. Everyone pitches in, he said. When an event is scheduled, everyone checks their calendars to see who can take a day off work to attend. The family also works to give Kiri’s parents the space to take care of Kiri and his siblings, Nora and Rocco, without the stress of driving from one event to another.

More than a dozen businesses in the Salt Lake City area have joined in helping Kiri and his family. Some have distributed swab kits, others have organized lunch and dinner events, or offered free meals to customers who get their cheeks swabbed and join the donor registry.

Katie Waltman, a jewelry designer and owner of Katie Waltman Boutique in Sugar House, signed up early. More than 300 people came by and picked up swab kits. Some took them home, while others swabbed their cheeks in the store.

“The effort — just to see everyone go to the level that they did, and to know that this is for everyone, not just for Kiri — has been incredible,” Waltman said.

At the Boneyard Saloon in Park City, 107 people showed up Wednesday to get swabbed in exchange for a voucher for a free lunch.

“We wanted to be good stewards for our community,” Dave Scott, the saloon’s general manager, said, adding that the bar’s owner “is quite the philanthropist, and he wants to help in any way he can.”

A night at the ballpark

Wednesday was “First Responders Night” at the Salt Lake Bees game. Duke-Rosati, a West Valley City firefighter, was on duty, in uniform, driving his fire truck to the north end of The Ballpark at America First Square.

Kiri, wearing a West Valley fire t-shirt, rode with his dad in the truck. As soon as they reached the ballpark, though, Kiri went to play on the nearby mini-golf course until it was time to yell “Play ball!”

Kiri held his dad’s hand as they headed to the elevator that would take them to the field. On the ground level, Kiri ran, jumped and skipped his way to the field, like any preschooler with a lot of energy. He showed off his brown leather baseball glove, mimicking the moves of catching a ball. He said he was looking forward to getting a baseball as a souvenir.

Before Kiri’s turn at the mic, Duke-Rosati was introduced.

“Today, Tony is here on behalf of his young son, Kiri, who has been diagnosed with a rare, aggressive brain disease and urgently needs a bone marrow transplant,” announcer Jeff Reeves’ voice boomed around the ballpark. “Kiri is still searching for his perfect match, and you could be the one to help save his life. … One quick cheek swab could be the cure Kiri and patients like him are waiting for.”

How donating bone marrow works

Donating bone marrow, in most instances, is similar to “a prolonged blood draw,” Duke-Rosati said.

“People are really hesitant because they think that it’s invasive,” Duke-Rosati said. “It could be if it’s the pelvic one, but it’s really, really easy if it’s the IV one.”

With the pelvic procedure, the marrow is collected through the lower back, but the donor is put under general anesthesia. (The campaign’s website, hopeforkiri.org, explains the procedure in detail — as well as telling Kiri’s story, listing where to get swab kits, and linking to a GoFundMe crowd-funding campaign to help with the family’s medical bills.)

The bone marrow registry pays for the donor’s travel and lost wages, as well as for a family member to accompany the donor and for a babysitter if the donor needs to bring their kids along.

Kiri’s family has been working to streamline the process of collecting swab kits and sending them to the registry for processing. Kiri’s grandfather, Ravath Pok, said they have sent out more than 100 kits each night, and drive to several locations a day to collect them.

The family is also planning a fundraiser, Boots and Bling, headlined by country singer Steve Bosco, on Sept. 24, at Club Eleven, 609 S. State St., Salt Lake City. (Go to countryforkiri.com for information and to buy tickets.)

What’s next for Kiri

Duke-Rosati said his son’s next MRI appointment is scheduled for Sept. 8, which should confirm the cerebral ALD diagnosis the family received in July. That’s also when his doctors recommend his treatments to start.

It’s not a rigid deadline, Jazmynn Pok said, because doctors can’t pinpoint exactly when Kiri’s brain will start to be affected by the disease. He might have weeks, or longer, before he starts showing symptoms — deterioration of speech, movement and vision.

Once a match is found, the next step in Kiri’s treatment will begin. Pok said his doctors have already scheduled pre-operation appointments.

“Depending on how the disease is moving, the doctors will advise us on the risks,” Pok said. “We will have to make a hard decision probably, on which risks we are willing to take with Kiri being so young.” Some of the risks, she said, are that Kiri’s body might reject the marrow, or he could experience organ failure.

The progression of cerebral ALC can vary from weeks to months, depending on the person.

“Somewhere between three to six months, it is too late to treat,” Pok said. “Part of the problem is that in Utah we just started screening for the disease in 2020, so a lot of the data is really [new]. … It’s hard to say how long you have.”

Kiri knows he needs to go to the hospital next month, Pok said. His siblings and his friends at preschool know, too. Kiri does not understand the extent of his illness, and he sometimes gets excited that he needs to go to the hospital, his mother said.

“‘Can we do this when I go to the hospital?,’” Pok said Kiri sometimes asks. “One time he hid with his cousin, and he did not want to leave. He told me, ‘I don’t want to go to the hospital and get my head fixed.’”

His parents said they are exhausted, but the community response has kept them going.

“The kindness that the community is showing us has been so powerful and so humbling, and everyone has rallied around us,” Duke-Rosati said. “I’m getting chills talking about it right now.”