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.
This foundation started with German, but it exists for every child diagnosed with HIKESHI-related leukodystrophy — and for every family that comes after us. Somewhere right now, a parent is hearing this diagnosis for the first time. We want them to find us — and to know they're not alone.
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.
- 1June 2016German is born
Our son German is born — a healthy, much-loved baby. The beginning of our family's journey.
- 2Summer 2017First signs something was wrong
Around his first birthday, German still hadn't started walking. Our pediatrician and we both began to notice that something wasn't quite right with his development.
- 3October 2017First MRI — and the first uncertain answers
At one year old, German had his first MRI. Doctors weren't sure what they were seeing — they suspected either a genetic condition or birth-related trauma. We were left with more questions than answers.
- 4October 2017A turning point in Israel
We traveled to Israel for further evaluation. By chance, we ended up in a private consultation with a leading pediatric neurologist who, after looking at German's MRI, immediately recommended exome sequencing — and specifically suggested testing for the HIKESHI gene.
- 5December 2017Diagnosis confirmed: HIKESHI-related leukodystrophy
The exome sequencing results came back. The suspicion was confirmed — German had a homozygous mutation in the HIKESHI gene. We finally had a name for what was happening, even though we learned that no curative treatment existed. Only palliative care.
- 6Autumn 2018Finding the IAHP — The Glenn Doman Institute
Refusing to accept that there was nothing to be done, we discovered a unique program at the Institutes for the Achievement of Human Potential (IAHP), founded by Glenn Doman. We began working with German using their intensive home-based developmental program — and continue to this day. Thanks to this work, German has developed remarkably and learned so much. As parents, we've gained an extraordinary experience and the conviction that doing something is always better than doing nothing.
- 72026Foundation launched
With published research now showing that gene therapy can restore HIKESHI function in patient cells, we launched this foundation to help bring a real treatment to German and every other child living with this disease.
"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