Our Family's Story and Mission.
Why one diagnosis became a mission for our whole community.
We are Artem and Kristina Manilov — the founders of the HIKESHI Foundation, and the parents of a child diagnosed with HIKESHI-related leukodystrophy.
We are not scientists. We are not doctors. We are parents who heard the words no parent should ever hear: "There is no treatment."
But as we read every paper we could find, we discovered something unexpected: the science to cure this disease already exists in proof-of-concept form. What's missing is funding, focus, and a community that refuses to give up.
That is why we founded HIKESHI Foundation — to make sure no other family hears those words again.
Our family.
A glimpse of the people behind the foundation — the family whose journey with HIKESHI-leukodystrophy started this work.
Timeline of our journey.
From our first concerns to the founding of HIKESHI Foundation.
- 1The early years
Birth of our son.
- 2First concerns
First symptoms noticed.
- 3Searching for answers
Diagnostic odyssey begins.
- 4Diagnosis
HIKESHI diagnosis confirmed via whole exome sequencing.
- 5A turning point
Learned the science exists for a cure.
- 62025
HIKESHI Foundation launched.
"We believe that no child should die from a disease the world already knows how to cure. We believe that a community that has faced — and overcome — devastating genetic diseases like Tay-Sachs and Gaucher can do it again. And we believe that families, working together, can move mountains."
— Artem & Kristina Manilov