My beautiful daughter, Lanie, has been through years and years of testing. Early in infancy we knew that Lanie was unique. She was not reaching milestones and was classified as having a developmental delay. We knew something was not quite right. This is where our search for answers began. She is nonverbal and is unable to walk independently. However, this has not stopped Lanie. Determined as ever, she found that walking (and even running) on her knees is easier for her to get around. Despite all the obstacles that Lanie has overcome, she is the happiest little girl. She has a smile that will melt anyone’s heart.
After years and years of testing, my family and I are beyond thrilled to be getting answers….FINALLY. I am optimistic that this search is finally coming to an end.
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