Drake Rayden
Drake Rayden Foundation · Upstate South Carolina
Drake and Vivian were both born with NKH, a rare genetic disease with no approved treatment. A one-dose gene therapy is being made for them right now. Help fund the trial.
Meet D & V
Drake and Vivian are nonverbal, medically complex and fiercely loved. Their big sisters and brother, Birkley, Harper-Kate and Rayph, call them “the littles.” Their mom and dad, Tarah and Eric, have spent ten years fighting a disease almost no one has heard of.
Born October 13, 2016 · Age 10
He came home healthy. Three days later he was fighting for his life, and at one month old doctors sent him home on hospice. He’s now ten. He survived a 2022 cardiac arrest that should have taken him, and today he tells his family what he wants with an eye-gaze device.
Born August 21, 2019 · Age 7
Her name means “alive, lively, bubbling with life,” and she is. Within hours of her birth she was diagnosed with the same disease as her big brother. Most nights, NKH attacks her body from midnight to dawn. Every morning, she’s still Vivian.
The problem
Nonketotic hyperglycinemia is a rare genetic disease. The body can’t break down glycine, an amino acid found in almost every food. It builds up in the brain and causes relentless seizures and lifelong disability. There is no approved treatment, and for 30 years families have had almost nothing.
Why it matters
“Rare should not mean disposable. Rare should not mean not valuable.”Tarah O’Sullivan, mom
Rare diseases rarely get research dollars. So a mom from Upstate South Carolina went back to school for biochemistry, and a family of seven built a foundation from their kitchen table. For ten years they’ve funded the research no one else would.
Vivian starts to scream again.
Eric has just laid down. He’s up with her three to five times a night.
Tarah goes in. Vivian is stiff as a board, arching, fighting in her crib.
“Shhh… you are safe. Mommy has you… just hang on.”
She slides to the floor beside the crib, cups her daughter in her arms, and prays.
“NKH does not play fair. It only knows one direction.”
“And now… right now… we finally have a treatment.”
Adapted from “Weary But Not Defeated,” Tarah O’Sullivan, September 2026
The breakthrough
The family calls it EmetAbba, which means “Faithful Father.” It’s a one-dose gene therapy designed to give the body a working copy of the gene NKH breaks. It’s being manufactured right now, and a first-of-its-kind sibling trial is planned at MUSC in Charleston.
This is a first-in-human trial, so there are no guarantees. It’s hope backed by a decade of work, and if it works, it could help most children with NKH, not just Drake and Vivian.
Sent home on hospice at one month old.
Tarah and Eric start DRF to fund NKH research.
With UT Southwestern. Vivian is born with NKH.
After the He Is Enough night raised over half.
Paid weekly as gifts arrive. This is where you come in.
Drake and Vivian, first in line.
Every inch, together
Tarah wrote, “Every inch has been fought and gained together.” So we built the meter like a tape measure: 1,600 inches to the trial, and 252 left to cover.
Includes $71,954 from 449 gifts on GoFundMe, updated live, plus checks, Venmo, PayPal and event gifts the family has reported through November 5.
“If you only can donate $25 today, do that. And if Friday comes and you have another $25, do it again.”
Covers one full inch on the tape. That’s one inch closer to the trial, and your name goes on the wall with everyone else.
“Maybe you know someone that has $50,000.” A lead gift or match could cover the last stretch in one move.
Two ways to help. Both matter.
01 · Give
Your gift goes to manufacturing, which the foundation pays every week as gifts come in.
02 · Share
One Facebook post from a local weatherman brought in more than $20,000 in a week. Yours could be the one.
And pray. “Pray boldly… He is capable and He is faithful. But then give.” Each week the family shares specific prayer requests for the trial, the doctors and Drake and Vivian’s nights.
This week’s requestsFind your way to help
Business owner, pastor, coach, creator, teacher, giver. Everyone has a specific way to carry an inch.
The village
449 people and counting, listed alphabetically and never by amount. Every name is an inch someone chose to carry.
“Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.”
Galatians 6:9 · To God be the glory