Summer 2014 update.

I have not been able to update because my internet access has been limited.  I contacted the Genetic and Rare Diseases (GARD) Information Center, and their response was beyond anything I could imagine!  The  phone call I received in response to my email boosted my confidence and hope. They provided contact information for a few researchers, which is more then the genetics specialist we see here in Syracuse had to offer. They also refereed me to a blood bank of sorts in which researchers will have access to. I simply provide a blood sample and whenever a researcher wants to conduct a study that pertains to our chromosome disorder they will use the blood. I had no idea such a place existed! I will elaborate more once I contact the researchers. Even if they appear to be dead ends thay may lead to other open doors or opportunities.
Aside from that my son is participating in a local parks and recreation program, and has done exceptionally well. I have not received any phone calls to pick him up. The majority of the kids are typical, and none have bullied or harassed him because of his differences. It is a huge step for him. It is nice to have part of the day to myself. I have been able to exercise and apply for jobs. I have also done a lot of cleaning and organizing.
Well I hope you all are having an enjoyable summer. I have a lot to do today, so I am going to cut this short. Just remember there is always a new door when one is closed. I keep advocating and perusing any lead I find. Eventually the hard work is going to pay off.
-Patricia