Lucy Douglas photo wearing a dark blue shirt and a helmet

Lucy Douglas

Our sweet Lucy was diagnosed in October 2016 with DDX3X. The pregnancy and delivery of Lucy was completely normal, but we knew at a very young age that something was not quite right. Although a very happy and calm in nature, Lucy was a “floppy” baby who had severe reflux. At around 6 months, I noticed there were no roll-over or sit-up milestones. Again at 12 months, those dates in her baby book remained empty, as well as a growing list for other core milestones. I cringed at the process of filling out the “developmental form” at the pediatrician office. By the time she was 2, Lucy had seen hearing and vision specialists, a geneticist, several neurologist, developmental pediatricians, and was involved in weekly speech, occupational, and physical therapies. Lucy’s world is her family and animals and has been described by several people as having the gift of “love.” Her smile and joyous laughter is contagious and we cannot imagine our lives without her.