This is Hadley, our inspiration for raising awareness and funds for the DDX3X Foundation. Hadley was diagnosed with DDX3X Syndrome in 2017 after a long three years of searching for answers for some challenges she was having such as inability to nurse, failure to thrive, and not meeting milestones. At the time of her diagnosis, there were only around 200 individuals diagnosed with DDX3X worldwide! DDX3X Syndrome can affect individuals differently, but for Hadley, it impacts nearly every aspect of her life. She has global developmental delays in all areas, yet works so hard to improve herself daily! Hadley has been in several therapies since she was 18 months old. We love our Hadley and her loving, enthusiastic outlook on life.

The DDX3X Foundation was the first place we turned to when we received Hadley’s diagnosis. The foundation was started by two moms whose daughters were among the first-ever diagnosed with DDX3X. The overarching goal of the foundation is to raise money to fund research working towards treatments or cures for DDX3X. (fun fact: A LOT of research conducted on rare diseases relies on funding from patient groups) The foundation has become home to us through the connections we've made, research Hadley has been able to participate in, and knowledge we’ve gained. If you want to learn more about the foundation please visit DDX3X Foundation.

Thank you to all of our friends and family who have selflessly supported Hadley and the Foundation in the hopes of finding a treatment!