Feb 17, 20207 min readHow to help a new NKH family.One subject that seems to come up a lot is what exactly can friends and family do for the family of a newly diagnosed NKH child. Or...
Feb 17, 20209 min readWelcome to Holland? Welcome to Shitsville more like.When you get a child that wasn’t quite what you were expecting, there are many standard sayings and meme’s and poems etc that you will...
Feb 16, 202017 min readPart Two. Facebook Posts. Diagnosis to End 2011At this point I couldn’t hide my despair any longer and I came off Facebook. I wasn’t eating or sleeping, I stopped seeing my friends, I...
Feb 16, 20206 min readPart One. Facebook Posts. Birth to Diagnosis.This blog post includes the Facebook updates from the day of Alices birth on 15th July 2011, to the end of that year. Looking back, it...