Ravath Pok is fundraising
Support Kiri's Fight for Life Against CALD
IMPORTANT UPDATE:
Kiri‘s mom here, Anthony and I want to thank all of our family and friends, and all of the incredibly generous extended networks and strangers in this world for the immediate support for Kiri.
We have some wonderful news to share following our latest meeting with the bone marrow transplant team.
Previously, Kiri’s treatment options were slim; the most viable path was a $3 million gene therapy. One of the biggest hurdles was the uncertainty of insurance coverage, as the process could take months or even years, and time is not something Kiri has.
At our most recent appointment, we learned that the team is now more optimistic that a bone marrow transplant will be a viable path forward, and importantly, one that insurance is more likely to cover.
With this, we are continuing to ask healthy people ages 18–40 to join the donor registry. We’re still hoping for a perfect match!
Because of this shift, we are lowering our fundraising goal to reflect updated, out-of-pocket costs related to the transplant, recovery, and the year-long period of at-home care that will follow.
Again, we are left speechless by the outpouring of support. Thank you to each of you, from the bottom of our hearts, for all the donations, donor registries, and shares. It means everything to us.
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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 film Lorenzo’s Oil. Without a bone marrow transplant, this disease is fatal. Kiri could start losing critical functions within months, and his life expectancy without a match is just 2 to 4 years.
To save our Kiri, a bone marrow donor and transplant is needed by Fall 2025. We have just weeks to help him.
Cerebral ALD is a rare, aggressive brain disease that attacks healthy children without mercy. It begins by silently destroying the brain— then painfully stealing speech, movement, and vision—until the body shuts down completely.
Why We Need Your Help
Thanks to incredible medical care, a lifesaving bone marrow transplant is possible - and insurance covers most of the treatment. But the journey isn’t over, we face up to $325,000 in testing, transplant copays, and recovery care.
The family will be facing a long uphill battle and enormous unforeseen expenses. While Insurance will cover a majority of the chemotherapy and transplant, the family will be dealing with out-of-pocket expenses, nearly a year of in-home care for Kiri after the transplant, months away from work, and so much more.
We’re fortunate to have been chosen by the Signature Cares 501(c)(3), now making your contribution tax-deductible (PayPal Giving Fund, will automatically issue tax receipts for such donations, not GoFundMe.). All financial contributions will help greatly.
Use of Funds:
Phase 1: Transplant
Donor match search, transplant, co‑pays, at-home care: $325,000
Phase 2 (if needed):
Gene therapy treatment, travel, lodging, hospitalization, aftercare: $3,000,000
We’ll keep everyone updated on which phase we’ve entered.
Kiri is the middle child of Jazmynn Pok and Anthony Duke-Rosati. He is the little brother to 5-year-old Nora, and big brother to 1-year-old Rocco.
Please donate, join the bone marrow registry, and share.
Join the Registry:
Bone Marrow Registry
Learn more about Kiri, CALD, and his journey:
Hope For Kiri
Follow on Instagram:
Hope For Kiri Instagram Page
Quick Tip: Many companies offer donation matching programs, which can double (or even triple) the impact of your gift. Before you donate, please check with your employer to see if they offer matching gifts for personal fundraisers or charitable causes. It’s a quick way to make your contribution go even further!
- M
- A
- J
340 supporters
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