Lucy Douglas

Our sweet Lucy was diagnosed in October 2016 with DDX3X. The pregnancy and delivery of Lucy was completely normal, but we knew at a very young age that something was not quite right. Although a very happy and calm in nature, Lucy was a “floppy” baby who had severe reflux. At around 6 months, I…

Mason Platt

Mason was diagnosed in March 2017 with DDX3X and has been confirmed as ‘de novo’. He is now 7 years old and had a rocky few years but is the happiness little boy you could ever wish to meet. He had a rare heart condition at birth and after having open heart surgery at 10…

Rose Michel

Rose was born the 3rd of may 2014 in Paris. The beginning of pregnancy was ok, at the 6th month echographs saw a “ventriculomegalie”. I did a foetal RMI, everything was “perfect in her brain” as the doctors said. The “karyotype” was fine too. Rose arrived 3 weeks early, she started to grow up like…

Nico & Josie

Nicole Marie “Nico” and Josephine Jude “Josie” Mueller are our identical twin daughters that were born in 2007. Both have a mutation on their DDX3X genes, which has caused them to have cognitive and physical disabilities. In utero, the doctors said they found some abnormalities in their brains, but they were not deemed severe. Although…

Virginia 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…

Peyton Grace

Peyton is our smart and joyful daughter who is full of spunk and a ton of fun. She brings happiness to everyone that is lucky enough to know her. All of these things trump her DDX3X diagnosis. Peyton has difficulty with every aspect of her development as well as 3 types of seizures, extreme sleep…

Lanie

My beautiful daughter, Lanie, has been through years and years of testing. Early in infancy we knew that Lanie was unique. She was not reaching milestones and was classified as having a developmental delay. We knew something was not quite right. This is where our search for answers began. She is nonverbal and is unable…