The Purpose
My son Jack was born with Fragile X Syndrome, the leading cause of inherited mental impairment and the leading known genetic cause of autism. As you can imagine, Jack’s diagnosis introduced our family to a whole new world. Fragile X, makes the hard times harder, but it also makes the good times that much greater. As parents, the one thing we all want is for our children to feel included. We have been so blessed to be surrounded by an inviting community that offers what seems to be an endless amount of resources to help include our Jack. The resources are out there, but they are sometimes hard to find. Through this website, I hope to make it a bit easier.
In 2016 my brother, Joe ran his first Tough Mudder to help bring awareness to Fragile X Syndrome. Jacky’s X-men was born because of my brothers determination to make a difference in the lives of those affected by Fragile X. Before this, the most I had run was a 5k. I never considered trying an obstacle race. BUT, in April of 2016 me and 16 of our closest friends ran the LA Tough Mudder for Jacky’s X-Men. It was unlike anything I had ever experienced. One might even call it a spiritual experience. No joke. The teamwork, the comradery, I was hooked. Since then Jacky’s X-Men have competed in half marathons, full marathons, Iron Men, half a dozen Tough Mudders, on and on the list goes. To find out when our next run will be make sure you keep up with the Jacky’s X-Men events link.
Also, since receiving Jack’s diagnosis it has been a goal of mine to share the lessons that we have learned of inclusion, compassion, empathy and love. As a teacher in our local elementary school district, I have seen the power that picture books carry when read to our children. To leverage that powerful medium, I have written a series of picture books. I have come up with a model in which Jack’s twin sister (Belle) teaches him about the world around him. In addition, she is teaching the world about Jack and all the amazing things he has to offer. Stay tuned for The Belle Books!
I hope that you will follow me in promoting a world that is filled with inclusion, compassion, empathy and love. In this world….no one is left behind.