Hope
for Kiri
Help Us Save Kiri’s Life – Just One Swab Could Be the Miracle He Needs 💙
We are running out of time to save our sweet, joyful Kiri.
Kiri is just 3½ years old. He has been diagnosed with Cerebral ALD, a devastating and aggressive brain disease—some of you may remember it from the movie Lorenzo’s Oil. Without a donor match transplant, this disease is fatal.
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.
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 2 to 4 years. We hope you will help us find a match soon.
According to his doctor, as discussed on July 28th, 2025, the deadline to begin treatment is September 8th, 2025. This only gives us a couple weeks to find a match. We are up against a deadline and action and diligence is extremely important.
KIRI NEEDS A DONOR MATCH... IMMEDIATELY.
With deepest gratitude and urgency,
Jazmynn Pok & Anthony Duke-Rosati,
and Kiri’s siblings, Nora & Rocco
How You Can Help
If you are in Salt Lake or surrounding counties, swab kits can be picked up at the following locations:
THIS SUNDAY AUGUST 3, 2025
The PARK CAFE - SLC
604 East 1300 South | Salt Lake City, UT 84105
Sunday AUGUST 3, 2025
Jazmynn, Kiri's Mom will be here from 11am-2pm
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THE CLIFF DINING & PUB - Draper
12234 Draper Gate Drive | Draper, UT 84020
Mon - Thur : 4pm - 10pm
Friday : 4pm - 11pm
Saturday : 10am - 11pm
SUNDAY : 10am-9pm
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Realty ONE Group Signature - MIDVALE
7650 S Union Park Ave | Midvale Ut, 84047
MONDAY - FRIDAY: 9am - 5pm
SATURDAY: 10am-5pm
SUNDAY : 11am - 4pm
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>> CLOSED SUNDAY<<
Realty ONE Group Signature - DRAPER
13894 S Bangeter Pkwy Suite 150 | Draper Ut, 84020
MONDAY - FRIDAY: 9am - 5pm
CLOSED Saturday & Sunday
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>> CLOSED SUNDAY<<
ONE Group Signature - VERNAL
418 E Main StVernal, UT 84078
MONDAY - FRIDAY: 9am - 5pm
CLOSED Saturday & Sunday
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>> CLOSED SUNDAY<<
A NEW DAY SPA - MURRAY
4970 S. 900 E. suite J Murray, UT 84117
Mon - Sat : 10am-7pm
CLOSED Sunday
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For after hours call or text RP 801-633-1990 or if you have a large group and/or business, please call to arrange pickup/delivery.
More locations to come
For those Outside of Salt Lake County
Bone Marrow Match Process
While ALD currently has no cure, a blood or marrow transplant (BMT) halts the progression of the disease and can prevent further damage to the brain, spinal cord and nervous system. BMT replaces unhealthy blood-forming cells with healthy ones, allowing the body to protect against additional complications. Although the transplant cannot reverse existing damage, it plays a vital role in preventing further progression.
- Bone Marrow matches are identified through a global registry.
- You must be a person between the ages of 18 and 40
- Because of his mixed-race heritage, those with partial Cambodian and/or Italian ancestry are especially encouraged to test—you may be Kiri’s best chance.
What Does the Registry Process Look Like?
- Join the registry: Click here
- Fill out a short 2 minute questionnaire.
- Upon completion, you are now REGISTERED with the Donor Registry.
- 📬 A Free Swab Kit will come to you in the mail
- 🧬 Swab the Inside of Your Cheek
- 📮 Return in the Pre-Labeled Envelope
- 🙏 DONE and THANK YOU!
Your cheek swab is processed, added to the global database, and if you are a match for Kiri, his team will be notified immediately!
If you are a match, what happens next…
Bone Marrow Harvest (surgical method)
Under general anesthesia, marrow is collected from the back of your pelvic bone using a needle.
Pain Level
- During: No pain during the procedure because you're under anesthesia.
- After: Soreness or bruising in the lower back area for a few days to a week. Most donors describe it like muscle soreness from a fall or hard workout.
- Recovery: Most return to normal activities within a few days, though full recovery can take 1–2 weeks.
Summary
- Pain level: Mild to moderate, temporary discomfort.
- No long-term pain or major risks in healthy donors.
- Kiri’s Doctors have confirmed that most donors say the experience is manageable and worth it to help save a life.
KIRI’s Cerebral ALD Journey
Born a healthy, beautiful baby boy on March 23, 2022, Kiri underwent the normal list of medical procedures typical of all newborns. However, the heel prick test revealed a devastating result. The test showed Kiri has an ABCD1 gene mutation which had a high probability of being adrenoleukodystrophy (ALD).
At this time, Utah had just added ALD/ABCD1 testing to the newborn screening beginning in 2020. 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.
Looking at Kiri today, you would never know, and he clearly does not know, what is ahead for him. With your help, we can make this challenging process the best that we can for little Kiri-Man.
More about ALD
ALD can manifest in zero, one, two or three ways, with the most severe being cerebral ALD (CALD). CALD affects the brain, typically during childhood. It occurs in about 1 in 21,000 boys between ages 4 and 10, affecting about 35 to 40 percent of boys with the ABCD1 mutation.
On July 23, 2025, Kiri’s routine bi-annual MRI showed evidence of early CALD and we are now mobilizing to treat him through bone marrow transplant in the fall of 2025.
What the Bone Marrow Replacement Process looks like for Kiri.
Treatment begins with chemotherapy (and sometimes radiation) to remove unhealthy cells in the bone marrow. This step creates space for the donor cells to engraft and function properly.
Healthy donor cells are infused into the patient’s bloodstream which then migrate to the bones, where they begin producing healthy blood-forming cells.
Recovery can take several months and requires close monitoring to manage potential complications.
Stats
70% of patients** in need do not have a matched donor from their family and must rely on unrelated registries
The long-term survival rate for children who undergo a BMT depends on the disease being treated... for genetic diseases, the rate is 80 to 95%.
CALD is a rare disease occurring in only about 1 in 63,000 boys between ages 4 and 10.
