Hope
for Kiri
Help Us Save Kiri’s Life – Just One Swab Could Be the Miracle He Needs 💙
Help Us Save Kiri’s Life – Just One Swab Could Be the Miracle He Needs 💙
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Please help us save our sweet, joyful Kiri.
At just 3½ years old, Kiri was diagnosed with Cerebral ALD, a devastating and aggressive brain disease—some of you may remember it from the movie Lorenzo’s Oil. Without a bone marrow transplant, this disease is fatal.
Cerebral ALD is a rare brain disease that begins by silently destroying the brain—stealing speech, movement, and vision—until the body shuts down completely.
We cannot overstate how grateful we are for the 13,000 people who have joined the National Marrow Donor Program registry through Hope for Kiri, the thousands more who have registered, delivered swabs to friends, family and strangers, hundreds who have volunteered and hosted events, and especially to two very special people who have already been a life-saving donor for someone else like Kiri. But, we are still on search for Kiri’s perfect match. Please help us to spread the word and collect even more swabs and registries, and, of course, to find Kiri his donor.
With deepest gratitude and urgency,
Jazmynn Pok & Anthony Duke-Rosati,
and Kiri’s siblings, Nora & Rocco
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.
Your cheek swab is processed, added to the global database, and if you are a match for Kiri, his team will be notified immediately!
Under general anesthesia, marrow is collected from the back of your pelvic bone using a needle.
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.
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.
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.
At just 3 years old, without knowing it, Kiri has already saved two lives.
In July 2025 when Kiri was diagnosed with Cerebral ALD, his family and friends ignited a fire through our communities to find Kiri a bone marrow donor. After dozens of swabbing events and pick up and drop off locations, Hope for Kiri collected 13,890 completed swab kits, and added 8,720 new donors to the National Marrow Donor Program database. This means that 8,720 eligible donors are now in a system where doctors like Kiri’s can search for a donor match for their patient.
Of these, 100 people have been contacted to donate to a patient and moved on to the next phase of testing. And of these, 4 people have already donated and saved a life. We cannot thank YOU enough. Because of swabbers like you, and event hosts and facilitators like S&S Presents and the Kilby crew, Kiri is not only going to find his own perfect match, but creates an amazing legacy of his own, which we hope leads to a lifetime of giving back in the way that all of you and each of our generous hosts and sponsors have.
