Tuesday, April 2, 2013
This past Friday (3/29) our Geneticist called and told us Ollie's CHARGE syndrome test came back positive. CHARGE syndrome basically breaks down all of Ollie's issues and labels them. I had never heard of the syndrome until they diagnosed Ollie. Normally, only 1-2 cases of it are diagnosed a year at Riley. Honestly, we knew they were going to treat him as if he had the syndrome, but we thought it would come back negative especially since it only picks up on the mutated gene 60% of the time. I have mixed feelings on this because of the unknown road ahead. Scary in many ways, but ever so hopeful! I'm grateful to know....just nervous! We will as a family CHARGE ahead!!!