About us
The Moiré Foundation
The Moiré Foundation was founded by Mieke Huijbers and Sebastiaan Akerboom. In the summer of 2023, we became the proud parents of our son Ivan. At the time, we had no idea that just a few months later our world would be turned upside down. Our little boy has UGDH syndrome, an ultra-rare metabolic disorder. Since his diagnosis, our lives have changed dramatically, and nothing can be taken for granted anymore.
Ivan
Here’s Ivan in his own words
Hello, I’m Ivan and I’m 3 years old. Everyone who knows me says I’m a happy and loving little boy.
I really love my mom and dad—they always make me laugh. Every day they do all kinds of exercises with me so I can keep learning new things. I can already sit up straight in my chair without falling over right away, and I often practice in my standing frame.
I go to daycare three days a week, and I really like it there. I have a lot of fun with the other children. The teachers help me practice new things, and together we make the nicest crafts.
I also get to work with different therapists. They are never afraid to challenge me and always find fun and creative ways to teach me new things. Luckily, I don’t get scared easily, even though I do have strong opinions about what I like and don’t like.
When I’m not practicing, I love going out and about: visiting my grandparents, taking walks outside, or looking at all the lights in the garden center. I also like it when we have visitors.
Of course, I want to tell you about my collection of projectors too. I have them in all shapes and sizes, and I love watching the moving colors and lights.
Sometimes eating is my favorite thing to do, and I just can’t get enough. Other times, I turn it into a game by keeping my mouth tightly closed. That can make Mom and Dad a little desperate at times, because they always remind me that food is also my medicine. I think they’re also a little proud of how determined I can be.
Cuddling is my absolute favorite thing in the world. On weekends, I love taking a nap on Mom’s or Dad’s lap while they drink their coffee. After all, all that practicing and playing can be quite tiring!
The Road to Diagnosis
Ivan was born in the summer of 2023 after an uncomplicated pregnancy. During the first six months, everything seemed to be fine. He was feeding well and growing as expected, and his motor development also initially appeared to be on track.
However, over time we began to notice that his development was slowing down and that he was no longer reaching the expected milestones. We became increasingly concerned and expressed our concerns to healthcare professionals.
We were taken seriously immediately. After several tests and whole exome sequencing (WES), we received a diagnosis within a few weeks: our sweet Ivan, at just nine months old, has a metabolic disorder—the extremely rare UGDH syndrome. There is currently no treatment available.
How is Ivan doing now?
Ivan is an incredibly sweet little boy. Given the circumstances, he is doing well. Since early 2025, he has been on a ketogenic diet, which has significantly improved his quality of life. Since starting the diet, Ivan has become more alert, more present, and much happier. He is also more open to development, interaction, and learning than before the diet. He continues to make small steps forward across all areas and is growing stronger over time.
However, Ivan requires a lot of care. He has hypotonia, meaning his baseline muscle tone is low. He is not able to sit, stand, or move independently. He cannot feed himself (although he does take all food orally), there is no speech development, and despite medication and the ketogenic diet, his epilepsy is not fully under control.
Ivan needs support with everything and must always be with someone. The hope and expectation is that he will continue to make small steps forward, but that he will remain fully dependent on care in the future.