Their story
Ten years. Every inch.
From a hospice discharge at one month old to the edge of a first-of-its-kind gene therapy trial. This is how they got here, and what’s next.
Drake Rayden is born
He comes home healthy. Three days later he’s lethargic, then fighting for his life in the Greenville PICU. At about two weeks old, he’s diagnosed with NKH.
Home on hospice
At one month old, doctors send Drake home on hospice. Tarah and Eric decide to fight for his life with everything they have.
Choosing life
They wean medications, try a hospital ketogenic diet and make the first call about gene therapy, from a hospital room.
A first, with cinnamon
Drake becomes the first child with NKH to try a cinnamon-based protocol with researchers. His medication dose is nearly halved by September.
The foundation is born
Tarah and Eric start the Drake Rayden Foundation “to bring hope through the gospel, raise awareness and funds for better treatment for NKH, and care for special needs families.”
Stepping out of the boat
Tarah speaks at a national rare-disease research conference. DRF funds mouse-model research at the University of Notre Dame. Tarah is accepted to Clemson to study biochemistry so she can understand her children’s disease.
Two hospitalizations in one week
Viruses and an oxygen crisis put Drake in the hospital twice in seven days. Faith, a village of friends and long nights carry the family through.
The gene therapy project goes public
DRF launches its gene therapy project with the Steven Gray Lab at UT Southwestern. The community raises the first $70,000 in ten days.
Vivian Faye is born
Her name means “alive, lively, bubbling with life.” Within hours, she’s diagnosed with NKH, the same disease as her big brother.
“I have a pulse.”
Drake goes into cardiac arrest. For almost 40 minutes he has no pulse. Doctors bring him back. “God’s grace,” Eric says, “he’s still with us.”
Vivian turns three
One day after Drake’s discharge, the family celebrates Vivian’s third birthday.
The first Drake Rayden Cup
Upstate high school soccer teams compete in the first Drake Rayden Cup, hosted at Dorman High, Tarah’s home school.
“Say cheese.”
Drake gives his family his first true smile that isn’t caused by a seizure, and learns to smile on cue when they say “cheese.”
Bones may break
Drake breaks his femur. Five days later, Vivian does too. “Bones may break, bodies may be sick… but our hope and faith is in the Lord.”
A breakthrough in his eyes
With an eye-gaze device, Drake begins to tell his family what he wants.
He Is Enough
A night called “A Decade of Endless Faith: From Birth to Breakthrough” in downtown Spartanburg raises over half of what the trial needs.
Manufacturing begins
Contracts are signed to manufacture the gene therapy the family calls EmetAbba, “Faithful Father.”
Paying as it’s built
“We aren’t fundraising for a project to come. We are fundraising while paying for the project that is happening right now.” Gifts go to manufacturing every week.
Impact Champions
The Andelyn Foundation’s Fore One Purpose tournament in Ohio names Drake and Vivian its Impact Champions and raises $50,000.
Looking Up & Counting Down
Hundreds gather in Spartanburg. Within two weeks, the family passes $1 million raised.
Drake turns 10
“10 years of this journey and we could never have written such a miraculous ending.”
The final inches
A single Facebook post from Upstate meteorologist Chris Justus brings in more than $20,000 in a week. The trial is 84% funded, and the rest is up to us.
Read it in their words. Tarah has written through every season, from the ICU to the kitchen table. All of it is here, from 2017 to today.
Read the journal