Scarlett was diagnosed with DDX3X in October 2018. It was the final piece of our puzzle after six years of searching. Scarlett was small at birth and had noticeably low muscle tone. She was late on most of her milestones, but just barely, so she flew under the radar for a long time with her doctor. She was the sweetest, happiest baby on the block. It was not until she was around 15 months old that we noticed there was something different about her. Doctors initially thought she had cerebral palsy and apraxia of speech. Eventually, an autism diagnosis was added around three years old when her social and emotional delays became more apparent. Doctors were ready to stop there with testing and were convinced that autism was the best diagnosis to describe her delays. However, when Scarlett’s little brother was born with low birth weight, low muscle tone, and delayed milestones as well, they moved forward with extensive genetic testing. That’s when we finally found the missing piece of our puzzle and joined the DDX3X family!
Scarlett is now seven years old. We live in Florida. She enjoys visiting the zoo and Sea World. She loves all animals, but lizards are her absolute favorite. She attends a special needs school with ABA therapy support, as well as speech and occupational therapy services. She is a first-grader now. She’s currently learning to read, write, and do addition and subtraction.
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.
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 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.
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