My Son was 10 months old when we found him having a seizure.  He was perfectly healthy and happy up until that point.  We found out he had three major strokes in a two week period and doctors could not figure out what was wrong. A month into our hospital stay he was diagnosed with MoyaMoya and on his first birthday he underwent surgery.  He never woke up.  Immediately after coming out of surgery in the critical care unit he had a massive stroke, rendering him with no brain function. 
I am desperately searching for other parents who have been in a similar situation.  There are so many questions and hardly any answers.
Through my research and from what I have been told by specialists my son never fit any criteria for MoyaMoya.  He was 10 months old with advanced narrowing of both carotid arteries, he had no previous symptoms, he took his fist steps 72 hours after his third major stroke (even after he was fully paralyzed), all bloodwork and tests done showed no other predisposing health conditions. I was told he was a mystery super baby. 
If anyone knows of a family that has lost their child after surgery please contact me. 

Ted, there are no words that can express how sorry I am that you lost our son.  I don't know of anyone in a similar situation but I wanted to reply to off my condolences.  This disease seems to affect everyone differently.  Some people have no symptoms before thier stroke, some have symptoms and never have a stroke.  There is so little known about Moyamoya. I wish I had a better answer for you.

Donna

Ted,
I am very sorry for your loss. I don't have experiece in that kind of loss. God has special plans for all his children.
Becky

Ted, we're sorry for your loss too.  Our son was 7 when he had a stroke.  We had no idea of the time bomb ticking in his head until then.  He had surgery as well.  At the time our surgeon repeatedly told us that during and right after surgery he was going to be at the highest risk for another major stroke.  Our son is fine now, but that time was a huge stresser for me knowing that.  Hope that helps to know what we were told.  our prayers are with your family.

Ted, Really sorry to hear the loss of the dear one.
our prayers are with you. Where was your son operated at? Who did the surgery?

We are from Canada.  He had his surgery in Toronto at Sick Kids hospital by Dr. Dirks. 

....PM sent....