Today… I feel like the grief of this is bottomless. I don’t know what else I’d expect, really. This gentle, every day asking of how do I feel? As if it’s one day going to switch into something tolerable, manageable, something other than this soul sucking everyday horror.
It hurts because I love. I miss him. I miss him I miss him I miss him. Honestly – the most soul sucking thing is that it didn’t have to be like this. There is a cure, it exists. It’s at that stage just before clinical trial. And that stings. That if money wasn’t a thing, a cure could have happened when he was a baby, and he could have been saved, and lived a whole life without NKH.
One day, that will be true for other babies, and it will be because of the relentless push and the hope of parents like me.
(It was Giving Tuesday yesterday. Please donate £10, so that one day, other kids with NKH will get to live: mikaerefoundation.org/christmas)
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit #fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DDKm0-UoIUf/
