Everyone here has been so kind. I am checking into everyones links. Their is so much more I don't know then I do. I will keep you posted when I start to get a handle on the nature of the disease. It helps knowing others have walked this road with their kids before us. Not knowing what to do or say, all I can think is may God be with us all.
Hey when you get some research done and start working on your game plan.......if you feel comfortable share some pics, like some of us do.
If you are uncomfortable I respect your privacy and will be here along with others to support you.
Give Gabrialle a hug and a kiss from us!
Yes, if you are not too busy, please keep us updated.
God bless
Hi again,
I am in contact with someone in your situation. I will contact you probably today or tomorrow, by Private Message (PM) when I have more for you, so please watch your Private Messages.
More info:
The best doctor in Ohio, according to a mom of daughters with Rett sydrone, is Dr. Max Wiznitzer, he is out of Univercity Hospital in Cleveland, Rainbows Babies and Children.
If you don't live in Ohio, perhaps you can contact his office & ask him who is the best doctor in your state.
Please let me know if you received my PM.