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.
Braylee was born February 2, 2014. Pregnancy was normal, but she decided to make her appearance at 36 weeks. She spent 3 weeks in the NICU due to failure to thrive, low blood sugar, breathing abnormalities and two different CHDs.
We finally got her diagnosis in November 2015. We have since become part of an amazing group of families and caretakers. Lena recently celebrated her 2nd birthday by learning how to crawl!
Kate is globally developmentally delayed, non-verbal and has autistic characteristics. She attends school in a severe/profound program where she continues to make slow but steady progress.
Help further our efforts to find a cure for DDX3X Syndrome, and support those affected by it.Donate
Register today to help expand what we know about DDX3X Syndrome and stay connected to our community.Registry
We’re here to answer your questions and help connect you to our community.Contact