Schye W.

Schye, the youngest sister of Keigan, Trei, and Chays, was born on October 24, 2013, and passed away 12 days later from anencephaly, encephalocele, and semilobar holoprosencephaly. “These are neural tube conditions,” says her mother. “We refuse to say ‘defects’ because she was perfect!”

Schye was a live wire. “She was feisty! She wasn’t a vocal baby—she only cried on the day she was born and on the day she passed. But she would let out these sighs of either complaint or comfort; she let you know if you were holding her wrong, or when you were being too loud.”

One memory in particular captures her personality for her mom and dad. “We had to keep her head bandaged. When it was time to change the dressing, we would lie her on her tummy on a small pillow. Either my husband or I would change the dressing and the other was in charge of keeping her face out of the pillow. A few days before she passed, I lay her facing her dad, I sat behind her and took off the bandages. She then proceeded to push herself up on her elbows and cross her arms. She thus rested her head on her arms and let out the cutest sigh, followed by a giggle. It was Schye’s style: she told you how it was. I call her my ‘Princessa’! She acted like royalty and was treated as such.”