Greg,
I'm sorry about your son's diagnosis. My thoughts are with you and your family.
My wife and I dealt with similar issues, when our unborn son was diagnosed with Dandy Walker Malformation. It's a relatively rare brain malformation that can result in anything from a perfectly normal person to a still born child to a potentially brain-dead person.
It's not the same, I know, but we spent so much time investigating Posterior Fossa anomalies, I think that we both became credentialed neurologists. We spent 7 months waiting in agony to see how he would be born and then we spent the first two years of his life hovering over him, trying to figure out if anything was wrong with him. In our case, Keegan is 4 years old and the brightest boy in his preschool class.
Hang in there, Greg and I hope that everything goes well. Medical Science is wonderful and constantly progressing, so I hope that it can help.
Donating to MS research is a wonderful idea as well. As a father, I know from personal experience that nothing, I mean nothing, can ever convey the fear and anguish suffered when our children are in serious trouble.
I hope that DIMEQ works out and helps you and your family through this difficult time.
Best Wishes,
Jared