A thought I can’t shake and wanted to share

I’ve been deep in the metabolic maps lately (https://metabolicatlas.org/)—the kind most of us never see unless we’re forced into this world—and something keeps standing out to me.

For years, galactosemia has been explained as a disease of toxic buildup.
That explanation is true. Toxic metabolites matter. They cause real harm.

But I’m starting to wonder if that’s only half the story.

What if some of the damage in galactosemia doesn’t come just from what builds up…
but also from what never gets built?

The brain—especially the white matter that connects everything—relies on very specific building blocks to form and maintain myelin. These aren’t optional extras. They’re structural. They’re foundational. They’re what allow signals to travel smoothly, quickly, and in sync.

When I follow the metabolic pathways closely, I see a quiet possibility:
that galactosemia may interfere not only by poisoning cells,
but by starving the brain of materials it needs to repair and maintain itself over time.

If that’s true, it could help explain things families know all too well:

• why diet saves lives but doesn’t prevent neurological challenges

• why MRIs can look “mild” while symptoms are anything but

• why tremor, speech, coordination, and fatigue show up in patterns that don’t quite fit a single explanation

This isn’t a finished theory. It’s not a claim.
It’s a question—one that feels important enough to sit with.

What if some of the injury in galactosemia isn’t just damage…
but unfinished construction?

I’m still mapping. Still learning. Still connecting dots that aren’t usually placed side by side.
But I wanted to share this thought out loud, because families deserve to know that there may be layers of this disease that were never explained—not because anyone failed, but because we’re still learning how deep metabolism really goes.

More soon. I’m staying curious. 💚