Who are Drake and Vivian O'Sullivan?

Drake Rayden O'Sullivan was born on October 13, 2016. He seemed healthy at first, but within days he became critically ill and was diagnosed with nonketotic hyperglycinemia at about two weeks old. His family calls him "Bubby" and "Drakey."

Vivian Faye O'Sullivan was born on August 21, 2019, and was diagnosed with NKH within hours. Her name means "alive; lively," and her family calls her "Viv" or "sissy." Together, the family calls them "D and V," or "the littles."

Both children are nonverbal and need round-the-clock care. They're also deeply loved by their parents and three older siblings, and by a community that has rallied around them for a decade.

In 2017, Tarah and Eric started the Drake Rayden Foundation, a 501(c)(3) nonprofit, to bring hope through the gospel, raise awareness and funds for better NKH treatment, and care for special needs families. Today the foundation is focused on getting Drake and Vivian to a first-in-human gene therapy trial planned for late 2026. In Tarah's words: "Right now, it's our story to tell, but one day, it will be theirs."

Read their full story, or help them reach the trial.

Sources: Saving Drake and Vivian (GoFundMe updates)