Hug your loved ones today, okay? Yesterday we went to a pub lunch by the river, cause the sun was out and we had some time. It was glorious and this guy was so happy to be out. It felt like we were memory making. I’m holding so tight to this picture with his grin and the joy.
Today Mikaere’s not 100%, there aren’t any smiles and I’m leaving him with Sam and his grandma so I can go say goodbye to another wee NKH Bee who has gained her angel wings. As a friend said, there’s another star in the sky tonight. She’s joining a constellation of NKH kids, which is just…
NKH is so rough. On our little bees, on us, on families and communities and just, hug your loved ones, okay?
#nkh#nonketotichyperglycinemia#glycineencephalopathy#nkhawareness#ifhnkh#metabolicdisorder
