I hate NKH. I hate it I hate it I hate it, I hate that it’s not malicious or intentionally awful, but that it just is what it is. Science, in the most brutal and matter fact way. That a single gene doesn’t produce quite the right protein, which means a teeny tiny amino acid can’t be broken down. That smallest of small changes means that entire lives are changed, children die before they’re meant to, they suffer seizures, aren’t able to control their bodies, can’t see like everyone else, can’t move, or play, or live independently. No running or dancing or futures like we dreamed of for our babies.
And death. All the time the death. And the grief. The grief. These two sweet girls were SO LOVED! They were both so beautiful and amazing and so so so fiercely loved. And now two families are hurting, in a way I don’t and can’t understand because it hasn’t happened to me. Yet. It hasn’t happened to me, yet.
But today isn’t about me, and my fears about our future with Mikaere. It’s about these two beautiful sweet girls who deserved more. Who are so loved, and desperately missed.
It’s for all the kids who have gone before them (Alexander and Arthur and Kaleb and Halle Mae and Cathryn, Maynak, Gregory, Siem and and and…), and all the kids who come after, who are yet to join our little community. It’s for all our NKH kids who, with a gene therapy cure that is IN THE WORKS (that’s been proven to work, that is so close I can taste it, a cure that is practically tangible except for the complete lack of funds) would be living completely different lives. It’s for a different generation of NKH bees, who one day might not have to suffer.
Today I’m donating to Joseph’s Goal for NKH Research in Willows and Ava’s name, and I’m holding my boys a bit closer, a bit tighter. I’m remembering Willow and Ava and the many others, who are so loved, still. Just like I love my boy.
Fly high, lovelies. We miss you so much already x