Introduction

Over the last 18 months my life has changed beyond what I could have imagined possible. My wife and I welcomed our first child into the world in January, 2004. My daughter's arrival was a very trying time. After some months of tests and other doctor visits she was diagnosed with a rare genetic disorder known as 1P36 Deletion syndrome.

In the coming posts I'll elaborate on some experiences that hopefully will be helpful to parents who have been through or are currently going through some similar things. At the very least it will be therapeutic for me to express them regardless of who's out there reading.