today i was in the chat room.. and was first time anyone else was EVER in there was awesome to chat with someone and connect..but room was terribly slow and some post reach the room 10 mins after being sent some  texted never reached the room  lost in cyber world somewhere..but still a wonderful experience to actually chat with someone.. was nice to meet  mary .. a mom struggling thru this terrible  disorder too

                   heather  emilysmom  who has moyamoya and NF1
                                                              ( neurofibromatosis)