Ruthie is 20 months old. She has recently been diagnosed with DC. More specifically, she has Revesz syndrome. She has many things that led us to this diagnosis. An esophageal stenosis, ataxic movement, balance issues, calcifications on her brain, etc.
We are in the process of scheduling a BMT. There were 2 donors that are a match, so that was exciting.
We are devastated and just looking to connect with others who have insight or who are going through the same thing.
I may later be ready to post her story online but as of now, I don’t know much and I’m just not ready.