Rose Michel
Rose was born the 3rd of May 2014 in Paris, France.
We did not notice any initial developmental challenges until around nine months when she wasn’t sitting independently and seemed sensitive and stressed. At that point, we turned to our neurological team for answers. After several rounds of testing without any answers, we turned to whole exome testing in February 2017 which revealed the DDX3X gene mutation.
Rose currently goes to kindergarten in the morning and to therapy in the afternoon—physical therapy, speech therapy…—
She started to walk at 3 years old and a half, she says some words and understands everything. She is progressing day to day with attention and perseverance.
She’s very happy, sociable, quiet, observant, and easy going. She brings a lot of love and happiness to those around her. DDX3X is not easy everyday but love and hope are our guides and we are positive and confident for Rose’s future. (Paris, the 25th of September 2018)
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
