On this day 08.11.2016. I wish I could step back into this day. I’d fight differently, for him I think. So much is rooted in things we didn’t know things we couldn’t have figured out. We trusted our doctors more than we trusted ourselves.
That would change. NKH is so brutal. I’m prepping for the next charity trustee meeting, and it’s a mix of gratitude and strategy and what else can we (I) do? I wish there was more of me, to do more. So much of my heart right now is weighted in grief, and it’s hard to keep the days straight, much less look objectively at a charity strategy and execution.
Kai deserved more. He deserved better. And I hate that we’re here, without him. I feel like I’m a broken record, but my heart my heart my heart.
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DCGzN5VBXls/
