stephanie
                    
                    
                    
                    
                    
                    
                    
                        
                        
                        hi, i was just looking on the net for more information also, but i have had a hard time finding any.  But i noticed you wanted to talk to someone with this sydrome who could give you and your daughter some advice....im a 23 yr old female and if you would like to know more about how ive grown up with this then feel free to email me