amajane

jrosie

I really don't quite know why I stumbled upon this board, maybe because I work with so many kiddos with special needs.  Anywho - your daugher is just cuter than words   Do you know about this support place that connects parents?  Looks like there are a few people with a diagnosis that seems similar to your little gal's.  Hope it helps you!

https://www.netnet.net/mums/mum_d-e.htm

amajane

Yes, I've sent them a check to get some more info but haven't heard anything back yet. I did find a woman (her website) who had a DS that died of the same syndrome 3 weeks after his birth. He was missing past of his cerebellum and therefore couldn't breathe on her own. I've contacted her and we've exchanged a few emails. I have yet to find anyone who has a DC that is living with DOOR. Thanks for passing on the info. I really appreciate it!