For those of you that have children with a rare Trisomy (13, 18, 9, 14, 8, 16 etc). Southern Illinois University does an annual survey tracking the children in an effort to provide information to parents. They put together the results annually as well.
If you are unfamiliar with them and haven't participated in the survey, I encourage you to do so as the more information from families the better. I just did the update to the annual survey and it took me less than 10 minutes to complete.
For more information you can go to their website: http://www.coehs.siu.edu/tris/
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