Our son Tyler is 8mths old and was finally officially diagnose with NS after DNA testing. This website is great knowing that there are others out there that have his condition and understand what we're going thru. Are any of you planning on going to the conference in Chicago this year? I was thinking of it since its not that far away from me.
Also, how do you posts pictures here? I've seen some of your children and would love to show off Tyler!