Everyday I grieve the alternate possibility, the one where Kai landed in the solid 75% and inherited one of the genes that could process glycine.
Where his little brain wasn’t having seizures, and he didn’t have to be on bucket loads of medication every six hours, where his future was bright and relatively pain free by comparison.
I feel robbed, for me, and Sam as parents. But mostly for our little guy – he’ll never know life like we do. He’ll never not know difficulty, and pain. He’ll have to fight his way through because his body literally can’t do what ours can, and it’s damaging his brain in the process.
I’m not sure exactly how to be okay with that. That there isn’t a lot I can do to prevent it. I have to put my faith in the research. Of the four researchers we know about, only one is looking at treatments. It’s with gene therapy, and I can’t help but feel it’s his future.
We started fundraising a small amount for Kai’s first Christmas.
We’ve already hit our target, which is a little overwhelming. There is so much love for our little family, I’m so grateful. I do believe it’s his future, which makes me feel like the more raise the better his chances.
We’ll see. If not for him than for kids that come after.