Hey there, I have gathered 6 other women and we are at babycenter anytime you want to vent or listen in on what is going on there:)
There is a little bit more info on research there too.
Talk to you soon
Angel Peanut
That is crazy because I was just there yesterday. And I know the website you were venting about benotafraid, and I feel the same way. I thought about joining and not telling them but..... but the only reason I would have joined is to be with people that have dealt with this also. Oh and just to let you know that there are now 2 people including myself that are on my new board for Meckel Gruber Syndrome at babycenter.com
Are you on other forums??? I am also at babycenter.com and made my own board for Meckel Gruber Syndrome, but so far I am the only one of there, but there is soon to be 2 because I found another women that has dealt with this as well... soo.... if you want to go there and look for me its AngelPsMom. If not that is fine to, I will come here to talk:)
Its been 7wks since I lost my Angel to Meckel Gruber Syndrome, its been the hardest thing I have ever been through. I just found out monday what she died of. SO I also found out that it could happen again.
I feel so lost