Yesterday was a blow; Duncan Millar, calls it a “blip” and in the end, he’s right, as are all the other people who jumped in to say all the positive things still going Neuren’s and our way- Fast Track, Orphan Drug, being able to reapply down the road. I get it, I do. This is not the end of the road. We wouldn’t even had known about it if Neuren hadn’t been ballsy enough to publicize their application. And we need people like that fighting for our girls and boys. It’s still got me down, though.
So, I did what I always do when I’m down like this, I turn to music, because music soothes the soul.
And so as we continue on this long and winding road that Rett syndrome put us on, know that the road is still leading to the door, and when opened, there will be the cure.
And we will climb that road Up to the Mountain. We climb because our children need us to, they’re counting on us. If I have to, I will crawl and claw my way to the top for Katie. And sometimes yes, there are days I’m afraid I will fall, that I will fail her, but I know in my heart, the day will come when we’ll look over and see that the road leads to the promised land of effective treatment and cure one day.
There are still tons of reasons to be optimistic, but as I told another mom, I would still kick something at the FDA today, if I could.
But, I want to thank Neuren for giving it a go, for believing in themselves and Trofinetide and our girls and boys and what the trial results showed. I am going to take a deep breath, maybe two or three, and know that moving forward, I believe my child’s fate to be in very capable hands and then Let it Be.