Chiara

Chiara, a DDX3X Warrior

In 2018, during a second-trimester routine ultrasound, the doctor found that my daughter’s brain was not developing correctly. This was the beginning of our journey into parenting a medically complex child who has a rare disease.

When Chiara was 18 months old, we finally received some answers. She was diagnosed with a rare disease called DDX3X. Less than 1000 people have been diagnosed with this. A few months later, she was diagnosed with bilateral polymicrogyria, which means there are too many small folds on the surface of her brain. She has other medical complexities as well. Sadly, the list is long.

Chiara has spent most of her days in a hospital or a rehab center.

She has yet to walk or say any words. She uses a wheelchair to get around and is progressing with her gait trainer. She wears a corset for over 20 hours per day due to her scoliosis.

I have hope that she will one day walk independently, even if it’s only a few steps. She is also making progress in learning to communicate using an iPad.

Chiara is curious. She enjoys discovering new aspects of our home and new places. She is easygoing and happy, except when her sister steals her toys. She loves music and musical toys. She has taught me the importance of living in the moment because she is incredibly talented at doing so.