I feel like I just want to sleep forever?

Your parents shouldn't be completely against it, listen if it bothers you to the point where you never want to wake up, do something about it. I can't even imagine what you're going through, I hope you get through it, stay strong. Is there a surgery you can go through to help with your disease? My sister has tuberous sclerosis, she had Huge tumor like lumps all over her face, and 22 years later finally sought out surgical help. She's great now.