Welcome Letter to Parents

Hello and welcome to the Gene DDX3X Facebook community.  If your child was just diagnosed, we all understand it can be a very scary and overwhelming experience.  You will find a lot of support and information in this Facebook group. A simple and comprehensive summary of DDX3X is available in this document from RareChromo.org. Read it…

Virginia Frances

Our sweet Virginia was born in March of 2005. After a completely normal pregnancy, she was breech, so the doctors flipped her and induced delivery. Virginia was very colicky from the start, and was late with all of her milestones. After 10 years of “doctor shopping” at all the “best” hospitals up and down the…

Families of girls with genetic mutation bond at Special Clinic Family Day

Originally posted on Lancaster Online Eric and Riley Naff’s daughter Mila was a handful when she was a baby. She wouldn’t sleep or eat and was hard to soothe. She also had developmental delays. Their pediatrician referred them to a geneticist. After the tests came back OK, it was on to a neurologist, a pediatric nutritionist,…

Peyton Grace

Peyton is our smart and joyful daughter who is full of spunk and a ton of fun. She brings happiness to everyone that is lucky enough to know her. All of these things trump her DDX3X diagnosis. Peyton has difficulty with every aspect of her development as well as 3 types of seizures, extreme sleep…

Lanie

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…