T-? Crunching the Numbers



The circle Katie drew during the Adult trial.

There are 31 days in March. That means at noon today, we entered the second half. Which, in turn, means there are less than 15 days until we will know the results of the Trofinetide Pediatric Trial. 360 hours. A full circle. Hardly seems like any time at all, for all of our waiting. A circle of hours, that’s it. Round and round, the clock hands go. It makes it feel like Time is catching up with Rett syndrome. And, I believe it is. But, how many seconds? 1296000. That makes it seem like an eternity. And it is; for some.


For some of the 1:10,000 girls and 1:1,000,000 boys that’s going to be seconds too late. No matter how fast this race is going, it’s just taking too long. But, for the new baby girls born today, 1 every 90 minutes, it’s not going to be too late nor for that little boy born sometime this week; treatment, real treatment, will be right on time.

math-1182795But, when?!?!?! Well, sorry to say, I’m pretty sure hearing by St. Patrick’s Day is out. History tells us that a trading halt would’ve been called by now for results out this week. BUT, if a trading halt is called by Friday, we could hear by the 20th. I’m working out all the scenarios out in my head and the numbers are swirling around and around, going all crazy.


Yet, in the end, all those numbers are superfluous. It really all comes down to just one number. The number 1. The 1 of 1:10,000 or 1:1,000,000 our children are. That is the most important number of all. And, I think we all know that. As we’re waiting for these results we are hoping for every single #1 child out there with Rett syndrome. And, when I think about that, our children being a number, the motto “more than just a number” comes to mind.

So, while I wait for this announcement, I think I’ll switch my thinking around a bit and not tell my self that “yes, there will be a treatment for that 1:10,000” Instead, I’m going to say to myself-“yes, there will be a treatment for that artist, the doctor, the writer, the scientist, the comedian, the statesman, the philosopher, the TEACHER in all of our children, who are more than just a number.”


So much potential waiting to be unlocked! Tick tock, hurry up clock!


Less than 360 hours, it’s crunch time!


This entry was posted in boys with Rett syndrome, cure, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial and tagged , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s