Obviously, I can't begin to say the right things, and I don't even know if I can help, but I thought I would offer you some online reading material.
Here is a case study for a 14 year old girl who suffers from KIDS. The references noted at the bottom might lead you to some more education material to read. http://www.sums.ac.ir/IJMS/9634/pezeshkp9634.html
Some info about reasearch being done on this syndrome: http://www.rarediseases.org/new/kid.htm
I hope maybe this can at least help you to know that there are dedicated groups of doctors out there who are working for a cure, or at the very least some understanding. You might even want to contact some of these groups to see if you can be involved if you wanted.
If you want more links, or want to talk, please email me.