Wednesday, March 1, 2017

Dear Rare & Beautiful Emelyn

Today, on Rare Disease Day, we celebrate you. With your contagious giggles and larger than life smiles, you bring joy to every person you meet. You do not know your own challenges…you only know your own determination. It’s a determination that motivates us to see blessings where others see mistakes. Science may call it a spelling error, but we know better. We know God doesn’t make mistakes. He knew what he was doing when he spelled your DDX3X gene just a little different. Whether you know it or not, you are on a path to teach our family the true meaning of patience, faith, and hope. You are beautiful and perfect in every way. We are so very blessed to have you as part of our family.

To learn more about DDX3X, meet other little girls with an extra special DDX3X gene, or to donate to research to find treatments for Emelyn and other children with DDX3X, visit