I’m musing today, as I think about the three major trials related to Trofinetide, that the trials are like the Triple Crown. Now, I don’t know much about horse racing (though the Rett community does have its very own race horse, Run for Retts!) but sometimes I like to watch the Triple Crown races-Kentucky Derby, Preakness Stakes and Belmont Stakes. I remember watching the Kentucky Derby at my grandma’s little diner, Smitty’s Snack Bar, in Meriden, CT. We had this little tiny TV at the end of the counter and I remember the tall, metal stools with red cushioned seats. All the diners would turn their table chairs around and, for a few minutes, we were like a family sports bar :), cheering on our favorite. Secretariat, he was the horse to beat. What a thing of beauty he was. Poetry in motion. It was exciting and a fond memory. But, I digress 😉
So, I’m counting the Adult trial as the Kentucky Derby. Now, Trofinetide is running the Preakness (sounds close enough to Pediatric 😉 ), and it’s on the last turn and coming in to the final stretch. And from the sidelines all the researchers and stockholders and donors are holding their breaths. Some are probably fiddling with something, trying not to look nervous, or standing stoically with their left hand on their right elbow and their right hand cupping their chin. Maybe some have their backs turned, afraid to look, but unable to help themselves, turn around now and again. Yet, if you were to take a snapshot of this moment, right before the final stretch, and look behind the frontline of people and look at the crowd-I think you would see thousands upon thousands of Rett parents, leaning forward, elbows on knees, hands clasped as tightly as their daughters’ and sons’ hardly believing the sight they are seeing-81 jockeys on a single horse urging it on. So many who can’t walk, yet all brave enough to sign up for this wild ride.
I nearly passed out during the final stretch of the Kentucky Derby, I was that tense. But, this is a whole different show for me. I’m leaning forward alright, same as others, but my hands aren’t clasped quite as tight as most. I have a smile on my face. I’m fairly certain about how this race is going to end. I’m almost to the point where I’m ready to pick up my belongings and head on over to Belmont with Katie and wait there, but I really want to see this finish. Pretty sure it’s going to be one for the books.