NKH can suck it, it’s so terrible and just. I hate it. I hate how much it has stolen. Genuinely. People keep saying how wonderful it is that I’m continuing with the charity, the Mikaere Foundation, as if it’s something I would stop.
When NKH is no longer a thing, because there is a readily available treatment, that is available to every child, then I’ll stop. Because until then, children will be experiencing pain. Living a life that’s less than they deserve. Dying decades earlier than everyone one else. Parents will have to say goodbye to their children, and then live in an after without them. And until then, it’s trauma after trauma for everyone involved.
When NKH is longer a thing, then we can stop.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCtbI8yi27z/
