Nico and Josie, our identical twins

Nico & Josie

Nicole Marie “Nico” and Josephine Jude “Josie” Mueller are our identical twin daughters that were born in 2007. Both have a mutation on their DDX3X genes, which has caused them to have cognitive and physical disabilities. In utero, the doctors said they found some abnormalities in their brains, but they were not deemed severe. Although…

A speaker stands before the family day attendees discussing about some topics on the projector board

Join us for 2018 Family Day!

Dear DDX3X families: We are putting together plans for our 4th Annual Family Day. Follow updates on this page and in our Facebook group.     Watch video presentations from past Family Day events: 2017 San Diego, CA 2016 Chicago, IL 2015 Strasburg, PA

A happy mother carrying her daughter, playing and laughing during winter

Assistive Devices for DDX3X

Many of our DDX3X Children require assistance for day-to-day activities. Our group of active DDX3X parents have compiled a list of devices they’ve found useful for their children. Hopefully one of the devices will help your children! Bamboo Braces www.bamboobrace.com The Bamboo Brace was created by physical therapists after searching for a dynamic elbow brace…

A father happily carrying his daughter on his neck with an outdoor background of trees and mountains

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 here and in our Facebook group. RECENTLY DIAGNOSED WITH DDX3X? page (http://ddx3x.org/recently-diagnosed-ddx3x/) provides some of the key information to…

Virginia Frances in her swimsuit enjoying the beach

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 the Special Clinic Family Day

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,…