Welcome to my blog about our angelic little guy named “Evrett”. He is quite possibly the sweetest little human I have ever met. Honestly. He is just genuinely the sweetest, most even-tempered little almost 3 year old!! Sadly, our “Bug” is facing large developmental delays with his speech, muscle tone, gross and fine motor skills, and feeding due to abnormalities in the white matter of his brain and 2 anterior temporal cysts. This is most likely due to a very rare condition called RNAse T-2 Deficient LeukoEncephalopathy (only 50 documented cases in existence thus far!), though the genetic testing to confirm this %100 is still processing.
My hope in creating this blog is to help me process on this tumultuous journey, and hopefully reach some other parent out there in the big wide world who may be going through the same thing (or something similar) with their little angel.
Thank you for visiting, please take a moment to follow Evy’s journey, and share it with those you know to raise awareness.