Even though Katelin will not be participating in the next trial with Trofinetide, it is impossible not to be excited. I am so filled with optimism as the list of approved sites continues to grow, making participation easier and possible for so many families. Oh, what awaits so many of them, they have no idea-their lives will change for a moment, a brief and shining moment; they will cry tears of joy instead of frustration and sorrow.
I remember this stage, the stage where you’re waiting to register you’re child, every day checking the criteria, marking it off in my head over and over. Everyday, checking whatever resource possible to see if how to register has been revealed. Everyday, checking over and over. So much anticipation, so much hoping, so much wanting.
I don’t envy these days for the parents who are now in the position I once was. I sympathize a bit, though. It’s such an up and down. Still, even I can feel it; the tension is building once again in the Rett community as Hope paws restlessly at the ground. And when those children are signed up, just watch when Hope rears upon its hind legs, paws in the air and races off. The finish line is so much closer every day.
It’s hard to know that even this trial will not get us across the finish line, but with luck, I’ll once again be in this position of waiting to register Katie when Phase III comes along. And hand in hand, young and old alike, will cross that line together.
For more information about sites and criteria follow http://www.rettstudy.com