Our lovely Lena was born in May 2014. She was happy and healthy, other than being diagnosed with microcephaly. At her 4 month checkup we were referred to a developmental pediatrician. That began a year of test after test, endless doctor visits, and many sleepless nights. 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! Through Early Intervention, she receives physical, occupational, and speech therapies, and special education, and especially loves the therapy pool! She also regularly sees a chiropractor. Lena is the happiest girl in the world! She loves playing in water, music, chocolate milk, and her dog. She works so hard, and is always so determined with everything she does. She has wonderful friends and family for support. She has the best smile and laugh, and brightens everyone’s day!
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