***RLou***

amajane

Our geneticist at UCSF is Mahin Golabi. I guess she is also associated with CPMC in San Francisco but also works out of Oakland Children's Hospital- she's everywhere. Anyway, every doctor we've worked with knows of her and speaks very highly of her. She's amazingly intelligent- I mean she diagnosed Marley at 6 weeks. She's a little kooky, very warm, friendly, but talks A LOT. Anyway, her phone number is 415-600-0750. If you see her mention my name. Please keep us updated on what they find. You are so close! Amanda

R*Lou

CRAZY, CRAZY, CRAZY!!! The syndrome that they have diagnosed Trevor and me with is called Simpson-Golabi-Behmel Syndrome.....named for her. We have to get in to see her. I am so thankful that we have this board and can pass along information like this. It just feels like everything is turning to be in our favor. All in all, the prognosis for SGB sounds pretty good. Oh, it would be so wonderful to find her and see what she thinks. I am about to cry--you don't know how happy you have made me.

amajane

I'm so happy to help!!! When all the excitement calms down, I'd still like to have a playdate with you and Trevor if you guys have the time. Keep me updated, okay?