Paroxysmal Kinetic Exercise Induced Dyskensia

Paroxysmal exercised-induced dyskinesia, also known as DYSTONIA 18, is now considered part of the Glut1 deficiency syndrome spectrum. http://reference.sharecare.com/healthreference/articles/nord/glucose-transporter-type-1-deficiency-syndrome OK, the name has changed from Paroxysmal Kinetic Dyskinesia and Exercise Induced Dyskinesia but the effects haven't. There is no "treatment" or "cure". The ketogenic diet does HELP but does not eliminate. Oddly, I "discovered" the diet on my own before I even knew what I had. I kept a note of what made me worse, what helped, etc. I do take meds that also help but do not eliminate completely. STRESS, BAD WEATHER, & DIET all play a part in the "jerk-fests" that I've come to live with. Also, I have weird neuro issues with this where my speech, sight, and walking are affected. Never for long but it seems forever. The jerking however, has lasted as long as an hour but the worst episode, even with meds, lasted 16 hours.  GOOD GRIEF!  I thought I'd die!  After that, I was shot physically for a day like I'd been put through a wringer.
I'm angry, but that is nothing new.  Genetics suck.  This is chromosomal on gene 16.  WHOOPEE!  That so changes my life!  NOT!  Now I am concerned that what's the possibility that this is passed on to my kids or grandkids?  How I pray it is not.  It is hell being trapped in a body that has a mind of its own and you are only along for the ride.
Those of you who received my prayer request know that my stress level is through the roof added to the stress of finally having a name/diagnosis to explain the neuro/jerking mess.  No hope of a cure/fix just try to live with it.
Pray for my baby.  She is only 23 and so needs God's touch. 
Thanks and hey, it could be worse....right?