Audrey is our eight year old daughter. She was born in Fort Worth, Texas, then a few months after her birth we moved abroad to East Asia. She was always very happy as a baby and never slept well at night. She spent her days with our amazing nanny who did not speak any English and her nights and weekends out and about with us. When she turned two and did not speak any words we began to become more concerned. Our doctor attributed it to her hearing many different languages day to day and recommended a hearing test. We were able to get a proper hearing test when she was about two and a half years old, which was the next time we left the country to have twins. To make a very long story short, after doing a hearing test and meeting with doctors and speech therapists in Thailand, everyone agreed that she needed to be in weekly one-on-one speech therapy. We could not provide this for her where we were living so we promptly moved back to America.

After arriving back in America we restarted our lives. Finding a job, cars, a home, as well as doctors and therapists to help her out. When she was three and we had settled into a city, she started nine hours a week of one-on-one therapy (speech, occupational, and physical). When she turned four and still had no words we began genetic testing. Many many tests were done and many many things ruled out. Years passed and genetic testing passed to not have any answers. She continued to grow and learn, at her own pace. Slowly beginning to talk and understand. She started preschool, then kindergarten, first grade, and second. We pushed through COVID and had amazing therapists and teachers who did not skip a beat providing her services and support. May 2022 we sent in a third round of genetic testing and honestly did not expect to find anything. While she does not speak much and has learning difficulties, we had continued living life everyday and giving her a fun childhood.

September 2022 we got a call from the geneticist that they wanted to see us. They informed us that the third round of genetic testing came up with an answer. We were very shocked. The geneticist informed us she has DDx3x genetic syndrome. It is very rare, mostly effects girls, and is found all over the world. We quickly found the parent Facebook page and were able to connect with other parents walking through very similar situations. The way parents described their children with this syndrome exactly could describe Audrey: happy, loving, loves water, loves music and dancing, and loves animals. Other kiddos with this syndrome range from not speaking to speaking some and not walking at all to walking. So funny and fun to find this community for us and for her. We wanted to start this blog to inform our community on things special needs, document our journey with her, and connect to others walking difficult journeys but finding the humor and hope everyday.

DDX3X Foundation