Mila
Mila came into our world the day after her due date on September 9, 2012 following a “typical” pregnancy/no complications. Immediately, however, we noticed she was hard to soothe and to nurse. Within a few months, our pediatrician suggested genetic testing, and our journey into a sense of anxiety, isolation, but ultimately, rich community had begun.
After testing negative for everything explored, Mila had whole exome sequencing and the DDX3X mutation was found (though not known yet as the cuprit.) Once DDX3X began being named, we found the wonderful community of families we’ve come to know and love.
In the meantime, Mila received DT, PT, OT, and speech therapy. She is in a multineeds Pre-K and loving the socialization. Mila is nonverbal but has begun to figure out how to communicate with her world. She loves music, water, and people. Mila’s soul shines through her smile.
We never knew how much we’d grow, learn, and love through having Mila. We are so very lucky.
Braylee
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.
Lena
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
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.
Donate
Help further our efforts to find a cure for DDX3X Syndrome, and support those affected by it.
Donate
Registry
Register today to help expand what we know about DDX3X Syndrome and stay connected to our community.
Registry
