Wednesday, May 18, 2011

Off we go, into the wild blue yonder!

Dylan has been approved to be part of a study for children with the 16p11.2 genetic abnormality (they are studying both children with the deletion and the duplication.  When we received Dylan's diagnosis (he has the deletion) I, the queen of Google, found the wonderful folks at Simons VIP Connect.  There I found a great chat forum and the opportunity for Dylan to participate in this study.  It's, for the most part, completely non-invasive.  The most invasive part is a blood test and a possible MRI (if we can get him to sit for an hour - ~insert hysterical laughter~).  I'm hoping he does because I'd like them to get a full picture. 

I've found a great group of parents on Facebook and I've heard wonderful things about this study - especially their Boston location.  Plus, because we are going to their Boston location - that means some quality time with our friends Andy, Lori and their three girls (one of which we haven't met yet!).

1 comment:

  1. That's great that you were able to find a study. Not only do you benefit Dylan, but others. Wonderful! Thanks for stopping by my the name of yours and am grabbing a feed.