Press kit · Saving Drake & Vivian

Drake (10) and Vivian (7) O’Sullivan, a brother and sister from Upstate South Carolina, were both born with NKH, an ultra-rare genetic disease with no approved treatment. Their parents started a foundation and spent ten years funding research. Now a one-dose gene therapy is being manufactured for them, and a first-of-its-kind sibling trial is planned at MUSC in Charleston. The trial needs $1.6 million, and the family has raised $1,347,790. They need $252,210 more.

$1,347,790raised toward the trial (live)

$1.6Mtotal needed

1 in 76Kbirths affected by NKH

10 yearssince Drake’s diagnosis

The story, in bullets

Who: Drake Rayden O’Sullivan (born Oct 13, 2016) and Vivian Faye O’Sullivan (born Aug 21, 2019), two of the five children of Tarah and Eric O’Sullivan.
What: Both have nonketotic hyperglycinemia (NKH). The body can’t break down glycine, which builds up in the brain and causes severe seizures and disability. Families have seen no treatment advances in about 30 years.
The odds: Drake was sent home on hospice at one month old. In 2022 he survived a cardiac arrest with almost 40 minutes without a pulse.
The response: In 2017 the family founded the Drake Rayden Foundation. Tarah went back to school for biochemistry. The foundation has funded NKH research at Notre Dame and UT Southwestern.
The breakthrough: A one-dose AAV gene therapy the family calls “EmetAbba” (“Faithful Father”) is in manufacturing. A sibling trial is planned at MUSC in late 2026.
The ask: Help fund the final $252,210 by giving or sharing. Live total at drf.refitsite.com.

Story angles

Local family, global first: an Upstate SC family funding a trial that could help NKH children worldwide.
The mom who went back to school: Tarah studied biochemistry to understand her children’s disease.
Community vs. a rare disease: one weatherman’s Facebook post raised more than $20,000 in a week.
Faith through a decade: “To God be the glory” has signed off every update for ten years.
The rare-disease funding gap: what happens when a disease is too rare for drug companies.

Quotes

“Just do something. Because nothing is not an option.”
Tarah O’Sullivan

“Rare should not mean disposable. Rare should not mean not valuable.”
Tarah O’Sullivan

“I watched his heart stop for almost 40 minutes… God’s grace, he’s still with us, and he’s doing good.”
Eric O’Sullivan

“Right now, it’s our story to tell, but one day, it will be theirs.”
Tarah O’Sullivan

Key dates

Oct 13, 2016: Drake born; diagnosed with NKH at about two weeks old
Aug 2017: Drake Rayden Foundation launched
May 20, 2019: Gene therapy project goes public
Aug 21, 2019: Vivian born; diagnosed within hours
Jul 20, 2022: Drake survives cardiac arrest
Nov 18, 2025: He Is Enough event raises over half the trial cost
Dec 2025: Manufacturing contracts signed
Late 2026: Planned trial at MUSC

How to describe the therapy

Please describe it as a potentially curative, first-in-human gene therapy trial, not a guaranteed cure. Confirm medical and partner details with the family before publishing.

Boilerplate

The Drake Rayden Foundation is a 501(c)(3) nonprofit founded in 2017 by Tarah and Eric O’Sullivan of Upstate South Carolina after their son Drake was diagnosed with nonketotic hyperglycinemia (NKH). Its mission is to bring hope through the gospel, raise awareness and funds for better treatment for NKH, and care for special needs families. The foundation is funding a one-dose gene therapy and a planned trial at MUSC for Drake and his sister Vivian. Learn more at drakeraydenfoundation.com.