Vi's Story

Violet was diagnosed with Cockayne Syndrome in 2021. Since she was born in 2018, she had always been small, but at the time we thought it was a feeding issue. As she got older, her doctors noticed other unusual characteristics: her head was not growing as expected and her gross motor skills were a bit delayed. Later, her liver numbers started coming back unusually high.

Despite undergoing test after test, including many rounds of blood draws, MRIs, and a liver biopsy, this sweet, tough kid stayed happy and developing. Finally, right before her third birthday, we heard from a geneticist that CS was the cause of all of her symptoms. Now, with the support of her family and friends, she's working on talking, signing, and developing her gross and fine motor skills. She's small, but she's mighty!