We’re always trying to find moments of joy for our boy. NKH is terminal, and we’re so lucky to have had the time with Mikaere that we have, but I’m so aware that time with him is precious. Finding sensory activities that make him smile (like foot baths!) is such a win, you know?
Considering how difficult the rest of his days are, with the seizures and mobility pain and just, the everyday frustrations that come with not being understood or being able to communicate your needs… I’m glad that there are intentional moments of joy in his days too. That smile, hey?
#nkhawareness#nkhcansuckit#nonketoticHyperglycinemia#glycineencephalopathy#raredisease#nkh#ifhnkh#glycineencephalopathy#cureNeeded#complexmedicalneeds
