Hayden Makris (San Antonio, TX)
Six years ago the bottom fell out of my world. I was faced with my biggest fear, that my little man would not outgrow the delays. That he was always going to struggle. It was the first time I heard the words Fragile X.
I can replay it as if I am watching a movie…exactly what happened. I can still hear the phone ring. The unbelievable sadness of watching my dreams for my child slip away, all of my questions for the future
that had no answers. Will he go to kindergarten when his friends do? Will he play sports? Will he go to dances? Will he have a girlfriend? Will he graduate? Will he get married? Will he ever know the sheer joy of being a parent? Will I ever get to be a grandparent? Will he be president? We just didn’t know.
We were given some of the greatest hope when we started a trial medication STX209. Hayden has been on it for over a year and we were told he could be on it until FDA approval. All that changed on May 15th. When, out of the blue, the call came that the extension was ending and we would have to wean him off almost immediately.
Shock and fear hit so fast. Are we going to lose all the gains we’ve made? Are we going to lose all the socialization and speech he has gained? We are suddenly back to, we just don’t know.
Please see more of Hayden’s story at: