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…

Mason Platt

Mason was diagnosed in March 2017 with DDX3X and has been confirmed as ‘de novo’. He is now 7 years old and had a rocky few years but is the happiness little boy you could ever wish to meet. He had a rare heart condition at birth and after having open heart surgery at 10…

Rose Michel

Rose was born the 3rd of may 2014 in Paris. The beginning of pregnancy was ok, at the 6th month echographs saw a “ventriculomegalie”. I did a foetal RMI, everything was “perfect in her brain” as the doctors said. The “karyotype” was fine too. Rose arrived 3 weeks early, she started to grow up like…

Recently Diagnosed with DDX3X?

Steps to connect, gather resources, and further DDX3X research If your child has just been diagnosed with DDX3X or you’ve just found this site and want to get involved in this community, here are a few steps to get started.     Join the DDX3X Facebook group This FB page is an online forum for…

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…

Join us April 10th and 11th, 2016 in Chicago for Family Day!

Dear DDX3X families: We are excited to announce our 2nd Family Day which will be this April 10-11 in Chicago. We are expecting about 20 families to attend with their daughters. We will have an early family dinner on Sunday evening including all children, and hopefully a group activity earlier on Sunday afternoon including the children…

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…