Hi and welcome Sharon!
What a story. I'm so very sorry that your son and family have gone through this. Right now, I do not know of a group or resource for you, but I will write to Dr. Linda... she knows so many people that she might know of someone who can help support you.
In the meantime, we're glad to be here for you, even though you will have to educate us on this condition.
I'll write to Dr. Linda this morning... but she won't get back to me until next week sometime. Our conference was this past weekend, so she's probably recovering from Post Event Trauma!! LOL!!