I hate that he’s not popping up on my feed, so I’m going to post photos of his life, on this day. I want to see his face, he existed and he mattered and he was so very very loved and is desperately missed, with an ache that pulls from my core.
So. Today, eight years ago in 2016, our beautiful beautiful boy was born, after a very gruelling birth. Sam and I were so happy he had arrived, we were so desperately in love with him. We had a blissful hour where the world was glorious and everything was okay. Then at one of the checks the nurse noted that he had no tone, hadn’t opened his eyes or tried to feed and he was taken from my chest in bundled into an incubator in NICU. We didn’t know what was going on, we didn’t know about NKH. All we knew was that ‘something’ was wrong and we hoped desperately that it was something that could be fixed.
He was so loved, though. So beautifully, wonderfully loved.
If you’d like to help celebrate his birthday, please consider donating to Kai’s memorial. We’re exploring what it would mean to start an endowment fund in his name, which would allow us to support families with NKH forever, for as long as we’re needed.
justgiving.com/page/forkaikai
Happy Birthday sweet boy. We miss you so very much x
(Clarification: usually all donations to the Mikaere Foundation go to NKH research. We’re still exploring possibilities, but the idea would be this fund would be a one off, funded by this specific memorial. Any income from the fund would be used to allow longterm, perpetual support for NKH families wherever its needed, whether that’s research or once we’re finally at clinical trial stage (!) supporting families access to treatments or whatever else might be needed. This is a long term plan, and part of Kai’s legacy).
#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #cure4nkh #nkhResearch from Instagram: https://instagr.am/p/DA-mGghB7Ta/
