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What we’re up to… November 26, 2024 at 10:00AM

By 26th November 2024 No Comments

On this day, 26 Nov 2016. Oh bub. So many of his days were like this – so much pain from the benzoate, and sleeping because of the glycine.

The realities of going through each day, of witnessing tiny segments of his life slowly and in detail have been both a balm, but also hard. These days were mundane, and I can feel it when I look back at these. I’m also terrified, because there will come a day where I didn’t take a photo of him and then what will I do on that day? Even worse, we’ll come to a point where there are no more photos ever. I hate that. I hate that so much.

He looks so little here. He’s just over a month old, 46 days. This baby. He is so very loved. I wish there was more time with him. I’m so sad there is not.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit #fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DC1JfwyvMWo/

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