A few years ago I started reading a blog written by a father (Robert Rummel-Hudson) about his little girl. She has a disease that is rare (Polymicrogyria (PMG)) and it is about their journey after the diagnosis. He is now coming out with a book about that journey and I hope that everyone goes out and buys it. You can read his blog here
Robert's writting has always kept me going back for more. Check it out.