What is AGO2?

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 If you’ve followed our journey, you’ve probably heard me mention that Wyatt was diagnosed with AGO2-related neurodevelopmental disorder, also known as Lessel-Kreienkamp Syndrome. But what exactly is that?


Let me break it down as simply as I can - for anyone who’s curious, confused, or just wants to understand a little more about our world.


Lessel-Kreienkamp Syndrome is a rare genetic disorder that affects brain development, communication, learning, and overall behavior. It’s caused by a mutation in the AGO2 gene, which plays a very important role in how cells in the body (especially in the brain) communicate and function.


This condition was only recently discovered in 2020, and as of right now, fewer than 150 children worldwide have been officially diagnosed with it.


It’s considered an ultra-rare disorder. When we first got Wyatt’s diagnosis, even our doctors hadn’t heard of it. I did what most parents do - I googled it. 


And… there was hardly anything out there. No guidebook. No long-term studies. Just a handful of published papers and a small number of families slowly finding one another online.


That feeling...of not knowing what the future holds - is scary.


In Wyatt’s case, this syndrome affects his development and communication. Here’s how it looks for him:

  • He is non-verbal, although he’s working hard to learn to express himself with help from songs, gestures, and an AAC device.
  • He has Level 3 Autism, which means he may need substantial support throughout daily life.
  • He experiences developmental delays, especially in motor skills, speech, and independence.
  • He has a very unique way of showing affection, learning, and interacting with the world.


Each child with AGO2 presents a little differently - just like every child with autism is different.



Getting this diagnosis gave us answers. For a long time, we blamed ourselves or just wondered why Wyatt was struggling in ways we couldn’t quite explain. The diagnosis gave us clarity and a starting point to advocate more strongly for what he needs.


It also connected us with other families whose children share the same diagnosis. 


That has been huge for our mental and emotional health.



Because Lessel-Kreienkamp Syndrome is so new, no one really knows what the future holds. One child might make huge progress over time, while another may experience regression during puberty or struggle with additional health challenges.



That uncertainty can be overwhelming - but it also gives us hope. Every day, researchers are learning more. Every child adds more to the story. And every small victory Wyatt achieves is one step toward a better understanding of this syndrome.



Wyatt isn’t defined by his diagnosis.


He is joyful. 

He is smart. 

He is hilarious.

He is our Wyatt. 


And no syndrome, no diagnosis, no gene mutation will ever change that.


If you’re reading this to learn, thank you. Awareness is powerful 💭🧐



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