I'm a little slow... Just saw your update and that this thread is a little older. I can ask my friend what support group she joined if that would help you. I know it helped her so much! Maybe some of the kids have the same form as your DD? I am so sorry you are having to travel this road. I know your heart will be filled with love when you hold your daughter even through all this struggle. Wish I could help some way.
@lbw1977, I'm sure you're reeling from this news and I know the internet can be so overwhelming. The thing about mosaicism is that, like you said, the range of developmental delay is so broad. Believe it or not, I have a friend whose son was diagnosed with Mosaic Trisomy 2 and he's 2 yrs old and has shown no sign of a delay and has no known health problems at this point. I also have a work connection who has a now 6 yr old daughter with Trisomy 18 (not mosaic). She has challenges but brings joy to her family.
As I've mentioned several times, I have a son with Down Syndrome (Trisomy 21) and although his diagnosis was overwhelming at birth, we're at a point of total joy now. I hope the same comes for you. Obviously our situations are different but please feel free to PM me if you have any questions.
Yes, those sites have been so helpful! Do you know if your family member is mosaic? I've been trying to find some mosaic T18 families to connect with, but haven't had much luck.
Re: Positive Verifi Test