Argonaute Syndromes Conference

 This weekend marks an important event... the Argonaute Syndromes Conference in Prague, Czech Republic. Families, doctors, and researchers from around the world are coming together to share knowledge, progress, and hope.

Financially, we couldn’t make the trip across the ocean, so we had to settle for watching through Zoom. Of course, it’s not the same as being there in person, but I’m grateful for the chance to still feel connected.

You may have noticed that I sometimes use different words when talking about Wyatt’s condition, and it might sound a little confusing. So let me break it down:

Argonaute Syndromes is an umbrella term for a group of genetic mutations that affect a family of genes called Argonaute proteins. These proteins are essential for gene regulation... basically, they help keep countless processes in the body running the way they should.

There are four main Argonaute genes: AGO1, AGO2, AGO3, and AGO4.

Wyatt’s mutation is in the AGO2 gene. This particular gene change was first identified in 2020 by Professor Davor Lessel and Professor Hans-Jürgen Kreienkamp at the Institute of Human Genetics in Germany. That is why you hear me refer to it as Lessel-Kreienkamp Syndrome more than anything. That means Wyatt’s diagnosis is part of something very new in the medical world - which is both fascinating and terrifying at the same time.

During the conference, I got to watch Wyatt’s introduction video. Somehow, seeing clips I recorded... ones I’ve seen a hundred times - paired with slow piano music hit me harder than I expected. I completely broke down in tears. Maybe it’s because things didn’t feel real until he was officially introduced at this conference, alongside other children with Argonaute syndromes. Suddenly, Wyatt’s rare condition wasn’t just words on paper... it was part of a bigger story.

As I watched, I felt a wave of emotions - pride, love, sadness, and fear. I pray every day for advances in research, for new understanding, for something that will give us more answers. But underneath it all, I’m riddled with anxiety about the future. The “what-ifs” can be paralyzing if I let them.

For now, I hold onto the hope that each conference, each research paper, each connection between families and scientists brings us one step closer to answers. Wyatt deserves that. All of these children do.

Kerri