Question 1

What is NKH (nonketotic hyperglycinemia)?

Accepted Answer

NKH is a rare inherited metabolic disorder in which the body can't break down glycine, an amino acid. Glycine builds up, especially in the brain, causing seizures and serious neurological problems that usually begin shortly after birth.

Question 2

What is glycine, and why is too much glycine harmful?

Accepted Answer

Glycine is an amino acid found in nearly every food and also used by the body as a brain chemical messenger. In NKH, the body can't break it down, so glycine builds up and overstimulates and disrupts the brain.

Question 3

Is NKH genetic? What causes nonketotic hyperglycinemia?

Accepted Answer

Yes. NKH is caused by changes in genes, most often GLDC (about 80% of cases) or AMT (about 20%). It is inherited in an autosomal recessive pattern, meaning a child inherits one non-working copy from each parent.

Question 4

How rare is NKH?

Accepted Answer

Very rare. MedlinePlus Genetics estimates NKH affects at least 1 in 76,000 people worldwide. The Drake Rayden Foundation has long cited roughly 500 children living with NKH around the world.

Question 5

What is the difference between severe and attenuated NKH?

Accepted Answer

Severe NKH, the more common form, causes intractable seizures and profound disability and is often life-threatening in infancy. Attenuated NKH is milder: children usually reach some developmental milestones, and seizures, if present, are often treatable.

Question 6

What are the symptoms of NKH in babies and children?

Accepted Answer

In newborns, NKH often causes extreme sleepiness, weak muscle tone, poor feeding, hiccups, and breathing pauses. Over time, children may have hard-to-control seizures, muscle stiffness, feeding difficulties, and severe developmental delays.

Question 7

How is NKH diagnosed?

Accepted Answer

Doctors diagnose NKH by measuring glycine in the blood and in cerebrospinal fluid, where a high ratio between the two is a key sign, and then confirming with genetic testing of genes such as GLDC and AMT.

Question 8

What is the life expectancy for a child with NKH?

Accepted Answer

It varies widely. Many babies with severe NKH do not survive infancy, while others live into childhood and beyond with intensive care. Children with attenuated NKH generally have a better outlook. Each child's doctors are the best source on prognosis.

Question 9

How is NKH treated today?

Accepted Answer

There's no approved treatment for NKH's root cause. Under their doctors' care, families commonly use sodium benzoate to lower glycine, dextromethorphan, anti-seizure medicines, and supportive care such as feeding tubes, oxygen, and therapies.

Question 10

Why is there no cure or approved treatment for NKH?

Accepted Answer

NKH is extremely rare, so few companies invest in research, clinical trials are hard to organize, and the disease affects the brain, which is hard to reach. Families like the O'Sullivans have stepped in to fund research themselves.

Question 11

Can two siblings both have NKH?

Accepted Answer

Yes. NKH is autosomal recessive, so when both parents are carriers, each pregnancy has a 25% chance of a child with NKH. Drake and Vivian O'Sullivan are brother and sister and both have NKH.

Question 12

How can I support a family whose child has NKH or a rare disease?

Accepted Answer

Show up in practical ways: bring meals, run errands, offer to sit with siblings, pray, and keep checking in long after the diagnosis. For the O'Sullivans right now, sharing their story and giving toward the gene therapy trial helps most.

Question 13

What is gene therapy, in simple terms?

Accepted Answer

Gene therapy treats a disease by changing a person's genes, most often by delivering a healthy, working copy of a gene into cells that have a broken one, so the body can make what it's missing.

Question 14

What is AAV gene therapy?

Accepted Answer

AAV gene therapy uses adeno-associated virus, a small virus not known to cause disease in people, as a delivery vehicle. Scientists remove its own genes and pack in a working human gene, which it carries into the patient's cells.

Question 15

What is EmetAbba, the NKH gene therapy?

Accepted Answer

EmetAbba is the name Drake and Vivian's family gave the one-dose AAV gene replacement therapy being developed for their NKH trial. It means "Faithful Father," and the family hopes it will address NKH at its root.

Question 16

Why is gene therapy given as only one dose?

Accepted Answer

AAV gene therapies are designed to be given once because the delivered gene can keep working for a long time in cells that don't divide, like neurons, and the body's immune response usually makes a second dose of the same vector difficult.

Question 17

Where and when is the NKH gene therapy trial for Drake and Vivian?

Accepted Answer

The trial is planned at MUSC (the Medical University of South Carolina) in Charleston, targeted for late 2026. Final timing depends on completing manufacturing, approvals, and the remaining funding.

Question 18

Why does the NKH gene therapy trial cost $1.6 million?

Accepted Answer

Gene therapies must be custom-made in specialized facilities, tested for quality and safety, and given under close clinical supervision. The family's total need for Drake and Vivian's trial is $1.6 million, with roughly a quarter-million left to raise as of November 2026.

Question 19

Who is developing and manufacturing the NKH gene therapy?

Accepted Answer

The project grew from gene therapy research the Drake Rayden Foundation funded starting in 2019. Per the family, manufacturing is with Andelyn Biosciences in Columbus, Ohio, and the trial is planned at MUSC in Charleston.

Question 20

Could the NKH gene therapy help other children with NKH?

Accepted Answer

That's the family's hope. Tarah has said that if the therapy works for Drake and Vivian's form of NKH, it could also work for a large share of the NKH population. Only careful trials will show whether that's true.

Question 21

Is gene therapy a cure for NKH?

Accepted Answer

Not yet, and no one can promise it will be. EmetAbba is a potentially curative, first-in-human therapy. Drake and Vivian's trial is designed to find out whether it is safe and whether it helps. There are no guarantees.

Question 22

How can I follow the progress of Drake and Vivian's gene therapy?

Accepted Answer

The family posts weekly funding and project updates on the GoFundMe campaign, which reflects gifts from every channel. You can also sign up for email updates and follow the Drake Rayden Foundation on Facebook.

Question 23

Who are Drake and Vivian O'Sullivan?

Accepted Answer

Drake (10) and Vivian (7) are a brother and sister from Upstate South Carolina who both have severe NKH. Their parents, Tarah and Eric O'Sullivan, founded the Drake Rayden Foundation and are raising the final funds for their gene therapy trial.

Question 24

How old are Drake and Vivian?

Accepted Answer

Drake turned 10 on October 13, 2026, and Vivian turned 7 on August 21, 2026. Both have lived far longer than doctors once expected for children with severe NKH.

Question 25

What happened to Drake in 2022?

Accepted Answer

On July 20, 2022, Drake went into cardiac arrest, and his heart stopped for nearly 40 minutes. He survived, which his family calls a medical miracle, though it left lasting injuries, including to his spinal cord.

Question 26

What does daily care look like for a child with NKH?

Accepted Answer

For Drake and Vivian, it's around-the-clock: tube feedings, carefully timed medications, oxygen and monitors, airway clearance, and constant watchfulness for seizures and breathing trouble, shared between Tarah, Eric, and family.

Question 27

Do Drake and Vivian have brothers and sisters?

Accepted Answer

Yes. Drake and Vivian have three older siblings, Birkley, Harper-Kate, and Rayph, making a family of seven. The family calls the older three "the bigs" and Drake and Vivian "the littles."

Question 28

What brings Drake and Vivian joy?

Accepted Answer

Family time most of all. Drake smiles when his siblings "run" his legs around imaginary bases and has learned to say "cheese" with his lips. Vivian loves orange juice, and both love being read to by their big sister.

Question 29

What role does faith play for Drake and Vivian's family?

Accepted Answer

Faith is at the center of everything for the O'Sullivans. The foundation's mission begins with bringing hope through the gospel, the gene therapy is named "Faithful Father," and nearly every update closes with "To God be the glory."

Question 30

How can I pray for Drake and Vivian?

Accepted Answer

Pray for the final funding, the last manufacturing steps and approvals, safety and success in the trial, peaceful nights for Vivian, strength for Drake, and rest and endurance for Tarah, Eric, and their three older children.

Question 31

Is the Drake Rayden Foundation a 501(c)(3) nonprofit?

Accepted Answer

Yes. The Drake Rayden Foundation is a 501(c)(3) nonprofit established in 2017. Its EIN (federal tax ID) is 82-2383660.

Question 32

Are donations to the Drake Rayden Foundation tax-deductible?

Accepted Answer

Yes. Because the Drake Rayden Foundation is a 501(c)(3) nonprofit (EIN 82-2383660), donations are generally tax-deductible to the extent allowed by law. Keep your receipt, and ask a tax advisor about your situation.

Question 33

Should I donate through GoFundMe or give directly to the foundation?

Accepted Answer

Both reach the same goal. GoFundMe is fast and easy to share; giving directly by check, PayPal, or Venmo also counts toward the same total. A mailed check avoids online processing fees. Choose whatever is easiest for you.

Question 34

How do I mail a check to the Drake Rayden Foundation?

Accepted Answer

Make the check payable to "Drake Rayden Foundation" and mail it to 2607 Woodruff Road, Suite E, PMB 352, Simpsonville, SC 29681. Checks are tax-deductible and avoid online processing fees.

Question 35

Can I donate to Drake and Vivian with Venmo or PayPal?

Accepted Answer

Yes. You can give through PayPal's donate page or on Venmo at @DrakeRaydenFoundation. Both gifts count toward the gene therapy trial and are added to the weekly total on GoFundMe.

Question 36

Can I set up a monthly donation to help Drake and Vivian?

Accepted Answer

Yes. Monthly donors are called Lifeline Partners, and you can give any amount. Set it up through the give page or email Lifeline@DrakeRaydenFoundation.com.

Question 37

Will my employer match my donation to the Drake Rayden Foundation?

Accepted Answer

Many employers match gifts to 501(c)(3) charities. Check your company's giving portal or ask HR, search for the Drake Rayden Foundation or use EIN 82-2383660, and submit your gift for a match.

Question 38

Can I give to the Drake Rayden Foundation from a donor-advised fund?

Accepted Answer

Yes. Recommend a grant from your donor-advised fund to the Drake Rayden Foundation (EIN 82-2383660), 2607 Woodruff Road, Suite E, PMB 352, Simpsonville, SC 29681. Note "Drake and Vivian gene therapy" as the purpose.

Question 39

What is the deadline to make a tax-deductible donation this year?

Accepted Answer

Give by December 31. A check postmarked by Dec. 31 generally counts for that year, as does an online or card gift charged by Dec. 31. Employer, DAF, and third-party gifts can take longer, so start those early.

Question 40

Where can I donate at the end of the year to help a child with a rare disease?

Accepted Answer

Look for a verified 501(c)(3) with a specific, near-term goal. The Drake Rayden Foundation (EIN 82-2383660) is raising the final funds for a one-dose gene therapy trial for two siblings with NKH, planned for late 2026.

Question 41

Where does my donation to Drake and Vivian go?

Accepted Answer

Donations fund the $1.6 million gene therapy project for Drake and Vivian, including manufacturing and the steps needed to reach the trial. The foundation pays for that work as donations come in.

Question 42

Can I make a donation in honor or in memory of someone?

Accepted Answer

Yes. Give any way you like and add the person's name in your GoFundMe comment, check memo, or payment note. To have the foundation acknowledge the tribute, email Info@DrakeRaydenFoundation.com with the details.

Question 43

How do I share a GoFundMe on Facebook?

Accepted Answer

Open the GoFundMe page, tap "Share," choose Facebook, and add a personal sentence about why you care before you post. You can also copy the link and paste it into a post, a group, or Messenger.

Question 44

What should I post to help share Drake and Vivian's story?

Accepted Answer

Keep it short and personal: who Drake and Vivian are, what NKH is in one line, the gene therapy goal, how close they are, and one link. Add why you care, then ask friends to share or give.

Question 45

Can I use photos of Drake and Vivian when I share their story?

Accepted Answer

Yes, when sharing to raise awareness or support the trial. Please use images from the press kit at /press/, credit "Drake Rayden Foundation," and don't alter them or use them for other fundraising.

Question 46

How can journalists or media contact the O'Sullivan family?

Accepted Answer

Email Info@DrakeRaydenFoundation.com with your outlet, deadline, and request. Approved photos, background, and key facts are available in the press kit at /press/.

Question 47

How can I host a fundraiser for Drake and Vivian?

Accepted Answer

Pick something simple you already do, like a birthday, bake sale, game night, or church offering. Send gifts straight to the foundation through GoFundMe or checks payable to the Drake Rayden Foundation, and let the team know at Info@DrakeRaydenFoundation.com.

Question 48

How can my business, church, school, or team help Drake and Vivian?

Accepted Answer

Groups can give, match employee gifts, take an offering, dedicate a game or event, and share the story with their community. Our /help/ pages offer specific ideas for businesses, churches, teams, schools, creators, and groups.

Question 49

How can I get updates on Drake and Vivian?

Accepted Answer

Sign up for the Drake Rayden Foundation's email updates on this site, follow the GoFundMe campaign for weekly funding updates, and follow the foundation on Facebook.

Question 50

Does sharing a fundraiser actually help?

Accepted Answer

Yes. Sharing costs nothing, and it puts Drake and Vivian's story in front of people who may give, pray, or connect the family with a major donor. In November 2026, one shared Facebook post brought in more than $20,000 in a week.

50 questions, answered.