Kolton Acree (San Antonio, TX)

By Deanna Acree

I am writing this in a plea to help all the families I love. Families I am friends with and have dinner with, families I have never met beyond an email, families I know just from Facebook. I may have never met many of these families, but we are joined together by love, hope, and passion for our children whom have been diagnosed with Fragile X Syndrome. Fragile what? Yes we get that a lot! Fragile X is a genetic cause of intellectual disability, leading known cause of Autism, what you will never read when you research Fragile X, is how amazing a person with Fragile X is! I should know because my 5 year old son was diagnosed three years ago. When we received our diagnosis, I had little hope, doctors were grim on what they believed he would do, could do or should do in his lifetime. Soon after I enrolled my son into a research study for language development and for the 1st time felt like my son and I belonged, we were understood, we were welcomed, and we were special! That very short research study changed my whole outlook, gave me hope, and introduced me to families that have become my best friends. As a mother, I am the voice of my son, I am his advocate. He needs me! He also needs others, doctors who believe in his potential and research studies that believe that one day a cure will be found.

Recently, STX209, a study targeted for Fragile X and Autism has announced they will be closing the study due to lack of funding. This is beyond devastating, beyond heart breaking, it simply cannot be! My son was not a participant of this study, but so many children with Fragile X have taken part and have a new life because of this study medication. I have watched with my own eyes the transformation these children have made. It can only be compared to a caterpillar turning into a butterfly!

Imagine your child is unable to tell you their tummy hurts, unable to make friends at school even though they love other kids, unable to run a quick errand with you because the store may overstimulate them, unable to look at you at night while you tuck them into bed. Just imagine! Your child is locked in world that no one can understand, they try and try but everyday life can be a struggle. A simple change in their routine can upset their whole day. This is what life has been like for many families I know before STX209.

Now imagine this, your child is sick, he can tell you what hurts, he goes to school and has friends high fiving him in the hallway, he can and wants to go to the mall, he hugs you before bedtime and whispers I Love You. He is living in a world that he deserves to be a part of, all because of this new medication that soon could not be available! How do you look at your son or daughter and tell them their time is this world is over, it’s time for them to go back to the world they once lived in, scared, anxious and overstimulated? You don’t, I will not sit here and believe that this is can end; I know life is not fair but this is beyond unfair. This is not acceptable! STX209 needs funding now, today, as part of the Fragile X community, I will not sit back and see what happens. Fragile X children are incredible, they change your life in more ways that can be counted. It should be on everyone’s bucket list to meet and fall in love with a child that has Fragile X! Please help us in our fight to keep research study STX209 open! This is our future, their future, my future, and my son’s future.