Our Story of Saving
Drake
Vivian
" I do not believe God brings disease to harm us, but I do believe He is sovereign enough to allow it and He will use it
for His glory and our good. I always prayed I would never watch my children suffer. I would lay down my life if I could to
stop this disease and take it from them.
But I do know two things from fighting to live through this suffering:
#1: God is enough. He has been enough on our worst days, and He continues to be enough to sustain us.
#2: He knew exactly how to motivate this Mama.
Exhaustion and failure is not an option when
your babies' lives depend on it.
You find a way."
- Drake and Vivian's Mother
Tarah O'Sullivan
Our Story
Coming ....
It is a single dose, a potentially curable treatment,
and the drug is being developed as you read this.
All that stands in between Drake and Vivian and the
life saving treatment
is your donation
Give life today while there is still time.
Racing Towards a Cure
October 13th 2016
January 2017
July 2017
Aug 2017 - Dec 2018
Jan 2019 - Aug 2019
Sept 2019 - July 2024
July 2024 - May 2025
June 2025 - Dec 2025
Jan 2026 - To Here and Now
Drake Rayden was born a healthy 7 lbs 1 oz. Two days later, he went into a coma, leaving doctors and the family baffled. A month in PICU confirmed their worst nightmare.
Drake was diagnosed with a terminal disease called
NonKetotic Hyperglycinemia, or NKH.
3 months of watching Drake seize up to 200 times a day with no real treatment options; Tarah, Drake's mom, knew they had to do something to help him.
The Drake Rayden Foundation, a 501(c)3 nonprofit was formed to bring hope through the gospel, raise awareness and funds for better treatment for NKH, and care for special needs families.
DRF travels the country meeting with doctors and researchers to help push treatment forward. Tarah joined the fight going back to study biochemistry to help advance their efforts
With all research pointing towards the cutting edge therapy of gene replacement being their only real hope. The O'Sullivans launched the DRF Gene Therapy Initiative in early 2019. August 21, 2019, their precious daughter Vivian Faye was born. Tragically, she also was diagnosed with NKH.
The O'Sullivans partnered with teams of researchers around the globe, trialing and testing all aspects of gene therapy with models that mirrored Drake and Vivian's mutations. Praise God they found the right combination and strategy to move into a clinical trial phase.
The O'Sullivans established relationships with gene therapy manufactures, located and partnered with a clinician that has NKH and Gene Therapy experience, and partnered with a hospital to run the first ever sibling study NKH Gene Therapy trial.
All the parts had been aligned, the only thing needed was the funding to begin. August 2025, the O'Sullivans hosted a fundraising dinner, titled He Is Enough and generated over half of the proceeds needed. December 2025 they signed the contracts and began the manufacturing of the drug.
Drake and Vivian's future is almost here. All that is left is to raise the remaining funds to finish the payment. We are in phase 2 of the manufacturing of the drug, the doctors and hospital is ready, Drake and Vivian are fighting to hold on... All Drake and Vivian need are your donations to receive the life saving treatment.
The O'Sullivan Family from left to right:
Birkley, Eric, Drake, Tarah, Vivian, Rayph, Harper-Kate O'Sullivan
Let's Get
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