Annie

Annie has a twin brother named Buck. They were born pre-maturely, at 31 weeks gestation. Both came into the world very small, but as they grew, a disparity became apparent between the two in terms of their rate of development. At the age of 3, Annie was diagnosed as having the DDX3X gene mutation. While it has been enormously insightful to connect with other girls and their families upon receiving this diagnosis, we are well aware that as of now there is not a medical cure for what Annie has. Our main focus continues to be helping Annie gain strength and confidence in the abilities she does have, and to love and cherish the special glow that she brings into our family.  Annie gets such enjoyment out of life. She takes great pleasure in interacting with animals, people, and she adores any type of water play!  As the youngest of 8 children, Annie has a very strong and supportive family unit along with her on her journey.  She is the blessing that our family didn’t know we needed.

Other Stories
Braylee

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

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

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

Contact

We’re here to answer your questions and help connect you to our community.

Contact

Stay Informed

This field is for validation purposes and should be left unchanged.