About this site
Our 10-year-old son was born with Joubert Syndrome, a rare genetic disorder that causes global developmental delays and, more recently, kidney failure. This site is a chronicle of the challenges, both physical and emotional, that our family faces as we confront some difficult decisions about Sam’s future.
I am a friend of Autumn, and I just wanted to say that you are in my thoughts. I can not imagine the pain you are going through. I wish you peace and I wish your children peace. And most of all I wish Sam peace. There are no words that can make any of this better for you. Just know that another mother sits and weeps for your family tonight and wishes she could take away all of your pain. Jen