Virigna Frances

Our sweet Virginia was born in March of 2005. After a completely normal pregnancy, she was breech, so the doctors flipped her and induced delivery. Virginia was very colicky from the start, and was late with all of her milestones. After 10 years of “doctor shopping” at all the “best” hospitals up and down the east coast, we ended up at the Clinic for Special Children in Strasburg, PA. We did genome sequencing through Gene Dx and the doctors determined Virginia has the DDX3X mutation.

Virginia is the heart and soul of our family. She loves her 3 siblings immensely and has made us all better people. She continues to make great progress through lots of therapy at her amazing school. She is learning to read and write. Physically, Virginia is doing very well. She loves horses more than anything, and prefers to spend all her free time at the barn. She brings us all great joy, and we are excited and positive about her future.

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