Drake Rayden Foundation

Friday FDA Update:

I am not sure if yall know this…

But the Drake Rayden Foundation just had our FDA meeting about EmetAbba….

And it was GOOD!!!!

Faith is becoming sight friends!

My goodness how surreal to be here after a decade of praying and hoping!!

Will update very soon, but keep praying, keep sharing, and please join us in giving. We are almost there!!

Praise God! He is Enough!

More information or to give come to our website-

Drakerayden | South Carolina | Drake Rayden Foundation Non Ketotic Hyperglycinemia, NKH , is a rare gentic disorder. The Drake Rayden Foundation is a local, non profit located in Greenville / Spartanburg, South Carolina. Our mission is to bring awarenss and better treatment and research for patients and families living with NKH.

**LOOKING UP & COUNTING DOWN**

We are just one day away from a night we have prayed for, hoped for, and worked toward for so long.

Over the past year, Drake and Vivian’s gene therapy project has brought us closer than ever to something we once could only hope for. Years of hard work, perseverance, and prayer have brought this treatment closer to becoming a reality.

Tomorrow night, we’ll come together to share the incredible progress that has been made and to reflect on what this treatment could mean for Drake and Vivian.

Through every step of this journey, the Lord has been faithful. And as we look toward their proposed treatment at the end of this year, we invite you to join us for a special evening of prayer, hope, and anticipation.

One day closer. One step closer. Still looking up. Still counting down.
We would be so honored to have you with us.

RSVP: https://www.drakeraydenfoundation.com/lucd-dessert-recpetion

Donation:
GoFundMe: https://gofund.me/ead9af419
Paypal: https://www.paypal.com/donate/?hosted_button_id=GT857Y2Y6WFB6
Venmo: https://venmo.com/u/DrakeRaydenFoundation

Fore One Purpose Returns To Help Family Battling Rare Disease

Author: Kelly Tucker_Columbus Dispatch News

If Wade Macedone has learned anything working in gene therapy research, it’s that parents of children with rare and complex diseases are truly an unstoppable force.

“There's nothing more moving in this entire industry than having a family or an angry mother or an angry father trying to figure out a path forward for their kid,” said Macedone, CEO of Andelyn Biosciences and board member of the Andelyn Foundation.

This year, the tournament will support Drake and Vivian O'Sullivan, siblings ages 9 and 7, respectively, who live with nonketotic hyperglycinemia (NKH). Four out of five babies with the rare metabolic disorder don’t live to one year, but the O'Sullivans have beat the odds and continue to fight as a family.

Read Article Here: https://www.drakeraydenfoundation.com/single-post/fore-one-purpose-returns-to-help-family-battling-rare-disease_author-kelly-tucker_columbus-dispatch

Original Post Here: https://www.dispatch.com/story/lifestyle/kindness/2026/09/13/rare-disease-trial-gets-boost-from-golf-tournament-one-purpose/91155946007/

Video Here: https://youtu.be/uQZFilT4WL8?si=SLyRl-LNMDhvpnVH
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Give Now to support Drake and Vivian's Gene Therapy_NKH Gene Therapy

All donations are tax deductible:

The Drake Rayden Foundation is a 501(C)3 Non Profit

GoFundMe: https://gofund.me/ead9af419
Paypal Link: https://www.paypal.com/donate/...
Venmo: https://venmo.com/u/DrakeRaydenFoundation

Mail Checks to
Drake Rayden Foundation
2607 Woodruff Road, Suite E PMB 352
Simpsonville, SC 29681

Learn More at DrakeRaydenFoundation.com

EmetAbba, HeisEnough

Columbus Dispatch Fore One Purpose Saving Drake and Vivian Andelyn Biosciences is a Columbus-based gene therapy contract devel...

Weary But Not Defeated_ Update Sept 15, 2026

Every season we walk through right now brings a new level of endurance. The next level of advancement, comes with a new level of trials.

The only description I can think of to try to explain our days is if someone told you that you had to journey through the sun to get to the end. You know that going through the sun is the path, and you know you have to commit fully to make it through the journey, but with every step forward, you feel the scorching heat and the weight of the carry.

We know God has called us to walk this path. The blinding light from the sun that He has meticulously laid as both a provision and a protection. The steps that only reveal themselves once the last step has been taken.

The physical demand to counter the pressure, the mental focus to cast down the enemies' flaming darts, and the endurance that is required to continue to press forward when your body is screaming to turn back, rest, and your mind wants retreat... is only the work of His hands and His endurance...not our own.

But on heavy days, when we beg for rest, we bow our heads and hear Father whisper..."My child, I know you are tired...but take the next step"... . . . . .
"Yes Lord...we are weary....but not defeated. We will continue to follow where you lead."

Vivian has been going through months of attacks on her little body. Nights so long they affect her days and wear her down. It is something new that we have not experienced in the past. She is calm and baseline during the day, but when the night falls, the screaming begins.

We lay both Drake and Vivian down around 8:30 to 9 pm, do all their night time prep, getting final meds ready, O2 monitors attached, and final positioning of their beds. Their final meds for the evening fall around 10 - 10:30 pm, like clock work.

And rest comes until about midnight.

Around midnight, every night, for almost 3 months now, Vivian has been violently attacked. Her mind begins to attack her body, and she thrashes and screams for hours.

Because of her disease and the metabolic disfunction, her brain starts a loop that we are trying everything in our power to break the new cycle. Natural supplements, pharmaceuticals, physiotherapy, swaddling, positional, head and breathing apparatuses....

Nothing has worked.

And she stays like this until around 5 am.... every..single... night.

Her legs have bruises where she has hit her heals on her shins, her ankles have cuts where her toenails have cut into her legs, no matter how many layers of socks we put on. We have started using long socks pulled over her hands to keep her fingernails from slicing her forearm during the attacks.

These attacks are the ones that send her into a fit that echos ear piercing shrills throughout the house. Our bigs upstairs come down throughout the night to try to help.

These are the attacks that break her little bones. We have began to put her leg brace on to try to minimize the thrashing and protect her susceptible leg.

Eric is pulling a lot of long nights... he is up with her 3-5 times a night and if she is really unsettled, he will bring her to her bean bag in the living room and sleep within arms reach of her on the couch to try to settle her.

The other night, Eric had just laid down and I could tell he was exhausted. I heard Vivian begin to scream again, so I went to try to let him rest. Vivian was so worked up when I got to her that she was stiff like a board, arching her body backwards in a C posture, thrashing and fighting in her crib.

All I could do was try to hold her and tell her she was safe. "Shhh, Shhh, you are safe....Mommy has you...shhhh....shhh...try to settle, you are safe baby....you are safe....just hang on."

She started to "unlock" and her body went limp for a few minutes. I slid to the floor, beside her crib, as I cupped her in my arms and tried to calm her racing heartbeat.

I couldn't help but cry out to Abba Father as tears streamed down my face. I rocked her in the floor as I prayed. "Lord....please....please give her rest, please calm her body....please stop these attacks....send your angels to surround her, remove the enemy from this place."

But NKH does not play fair.... it only knows one direction....and that is relentless suffering to all it effects.

Please, hear my plea. NKH will not stop this vicious attacking of children across this county until we have a treatment for it.

And NOW....RIGHT NOW we finally have a treatment.... a treatment that could CURE this disease..... CURE this disease with just one dose. A gene therapy that can correct the root cause of the disease.

And it is in its final manufacturing stages....

All that is left....the only thing between Drake and Vivian and the treatment is funding.

Funding that you have. Funding that you will never miss. Funding that could change a generation of families that are desperately trying to hang on to hope. Funding that is sitting in your bank account for a rainy day.

Please, please do something to help us. You don't have $760,000 to pay it all.... But maybe you have $1,000, maybe you have been blessed and you have $10,000. Maybe you know someone that has $50,000.

You can do so much more than you think.... if you only take the next step forward in obedience.

Nothing about our family is special, not one thing. We are as average as they come. But we refused to sit aside and let a disease ravage children, babies that do not deserve to live a life of suffering like this.... and we stepped in. And we keep stepping forward, every brutal inch, because we have to. Someone has to stop this.

And I am begging you...step forward with us. Every inch... if you only can donate $25 today, do that. And if Friday comes and you have another $25, do it again.

Every inch has been fought and gained together. Just do something. Because nothing is not an option. Pray with us and then turn your prayer into action.

Prayer without action is like us looking at a hungry child, praying for them and then sending them away hungry, when we have been blessed with the resources to end the hunger. How do we stand before the Lord one day?

Friends and family, if we fail here... if we do not find a way....if we do not generate the funding....the drug development stops........and the awful suffering continues.

Please hit your knees, find your feet, and then join our fight.

If you want to meet us, learn about our efforts, come. We are hosting an update event a week from today, September 22nd, Downtown Spartanburg. It is free to attend, all we ask is you register so we can have a headcount. Here is the link: https://www.drakeraydenfoundation.com/lucd-dessert-reception

Register right now before the distractions and excuses flood in.

If you can't come....give something. You may not have many resources but you have a dollar. What can a dollar do? It can show the next person that they have no excuse to not give their dollar. And you know what 760,000 one dollar bills look like..... A TREATMENT.

https://www.drakeraydenfoundation.com

Help us. Help us share because it costs you nothing.

Pray boldly because we are to continually seek the Father, He is capable and He is faithful. But then give....no excuses...just obedience.

Because tonight when you lay down, when you tuck your babies into bed for sweet rest......

We gear up for battle.

And this will continue .....every night .....until you join us.

Saving Drake and Vivian
HeisEnough...EmetAbba

Give Now to support Drake and Vivian's Gene Therapy_NKH Gene Therapy

All donations are tax deductible:
The Drake Rayden Foundation is a 501(C)3 Non Profit

GoFundMe: https://gofund.me/ead9af419
Paypal Link:
https://www.paypal.com/donate/?hosted_button_id=GT857Y2Y6WFB6
Venmo: https://venmo.com/u/DrakeRaydenFoundation

Mail Checks to Drake Rayden Foundation
2607 Woodruff Road, Suite E PMB 352
Simpsonville, SC 29681

Learn More at DrakeRaydenFoundation.com

Drakerayden | South Carolina | Drake Rayden Foundation Non Ketotic Hyperglycinemia, NKH , is a rare gentic disorder. The Drake Rayden Foundation is a local, non profit located in Greenville / Spartanburg, South Carolina. Our mission is to bring awarenss and better treatment and research for patients and families living with NKH.

💙 **LOOKING UP & COUNTING DOWN** 💙
We are just **TWO WEEKS AWAY** from a very special night—and we would love for you to join us.

📅 **Tuesday, September 22**
⏰ **6:30–8:00 PM**
📍 **Rigsby’s Event Space | Spartanburg, SC**
🍰 Dessert Reception

One year ago, some were asking if this could really happen.

**Today, we are counting down.**

Over the past year, Drake and Vivian’s gene therapy project has made incredible progress. The science has advanced. The necessary steps are moving forward. And the treatment we have worked toward for so many years is closer than it has ever been.

Now we are in the **FINAL STRETCH.**

Join us for an evening of dessert and fellowship as we share:

✨ Exciting updates on the gene therapy
🧬 The incredible progress made over the last year
❤️ What this treatment could mean for Drake & Vivian
🎯 The final funding still needed to get us there
🙏 And a very special time of prayer over Drake and Vivian before their proposed treatment at the end of this year

**This is a night we want to share with the people who have helped carry us this far.**

👉 **PLEASE RSVP HERE:**
https://www.drakeraydenfoundation.com/lucd-dessert-reception

🎥 **NEW TO THEIR STORY? WATCH DRAKE & VIVIAN’S VIDEO:**
https://youtu.be/TfeouL8rA2k?si=rsR-ayEdvB91TPi4

❤️ **CAN’T ATTEND? HELP US FINISH.**
Give toward the final funding needed for their treatment—or simply share their story and help us reach someone who can.

👉 **GIVE OR SHARE:**
https://www.gofundme.com/f/saving-drake-and-vivian-gene-therapy-treatment?attribution_id=sl:34aafbbd-4725-4d1b-87eb-03558af1a318&lang=en_US&ts=1788542114&utm_campaign=fp_sharesheet&utm_content=amp30-control&utm_medium=customer&utm_source=copy_link

Learn more about the gene therapy and Drake & Vivian’s journey at **DrakeRaydenFoundation.com**.

**We have spent years working toward this moment. Now we are looking up with hope—and counting down the final months.**

Please come. Please pray. Please give. And please share. 💙

💙 **LOOKING UP & COUNTING DOWN** 💙
We are just **TWO WEEKS AWAY** from a very special night—and we would love for you to join us.

📅 **Tuesday, September 22**
⏰ **6:30–8:00 PM**
📍 **Rigsby’s Event Space | Spartanburg, SC**
🍰 Dessert Reception

One year ago, we were asking if this could really happen.

**Today, we are counting down.**

Over the past year, Drake and Vivian’s gene therapy project has made incredible progress. The science has advanced. The necessary steps are moving forward. And the treatment we have worked toward for so many years is closer than it has ever been.

Now we are in the **FINAL STRETCH.**

Join us for an evening of dessert and fellowship as we share:

✨ Exciting updates on the gene therapy
🧬 The incredible progress made over the last year
❤️ What this treatment could mean for Drake & Vivian
🎯 The final funding still needed to get us there
🙏 And a very special time of prayer over Drake and Vivian before their proposed treatment at the end of this year

**This is a night we want to share with the people who have helped carry us this far.**

👉 **PLEASE RSVP HERE:**
https://www.drakeraydenfoundation.com/lucd-dessert-reception

🎥 **NEW TO THEIR STORY? WATCH DRAKE & VIVIAN’S VIDEO:**
https://youtu.be/TfeouL8rA2k?si=rsR-ayEdvB91TPi4

❤️ **CAN’T ATTEND? HELP US FINISH.**
Give toward the final funding needed for their treatment—or simply share their story and help us reach someone who can.

👉 **GIVE OR SHARE:**
https://www.gofundme.com/f/saving-drake-and-vivian-gene-therapy-treatment?attribution_id=sl:34aafbbd-4725-4d1b-87eb-03558af1a318&lang=en_US&ts=1788542114&utm_campaign=fp_sharesheet&utm_content=amp30-control&utm_medium=customer&utm_source=copy_link

Learn more about the gene therapy and Drake & Vivian’s journey at **DrakeRaydenFoundation.com**.

**We have spent years working toward this moment. Now we are looking up with hope—and counting down the final months.**

Please come. Please pray. Please give. And please share. 💙

Still getting the words together to explain what we experienced in Ohio!

More to come but God is so faithful!

Grateful would be an understatement.

Thank you to everyone who supported us last Monday. Whether you golfed, sponsored, bid, donated, spread the word, or simply showed up, you made the difference.

We can’t wait to share more photos and information soon. But from the bottom of our hearts, thank you.

Why are NKH seizures different from other seizure disorders? 💙
Because they are not caused by the brain misfiring. They are caused by glycine — an amino acid the body cannot break down — building up to toxic levels and poisoning the brain from birth.
Most seizure medications target electrical activity. They cannot touch glycine toxicity. Which means NKH families spend years trying medication after medication knowing none of them are a real answer.
Gene therapy is the real answer.
Donate here: https://www.paypal.com/donate/?hosted_button_id=GT857Y2Y6WFB6

So incredibly grateful for all the teams of people working together to make this a reality!

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