Ten years, in her words.

Fore One Purpose Returns to Help a Family Battling Rare Disease

(Exerts below are from articles published at Columbus Dispatch https://www.dispatch.com/story/lifestyle/kindness/2026/09/13/rare-disease-trial-gets-boost-fr

Weary But Not Defeated

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 y

God's Full Circle

We met a precious family with NKH this past weekend. They drove to our home on their way home from a family vacation headed back to Kentucky. I had been speaking with the mom for over a year about diet options and the wa

April/May Update

Things have been so busy. I hear so many families say this, and although our April/May might look different than most, I completely feel this deep in my bones!April and May have been meetings every week, project updates

Who Broke The Path?

I was presented with this question/statement the other day that keeps rattling around in my head. You know when things just hit differently and it takes you a few days to process how you feel and make sense of the respon

Watch the 1 Min Video Update

Meet Eric and Tarah O'Sullivan, parents to Drake and Vivian, and founders of the Drake Rayden Foundation. Watch their one minute video explaining the importance of the HeIsEnough Event on November 18th.

The Time Has Come...HEISENOUGH Event

Join us for one night, our final ask, where we lay

Happy 9th Birthday Drake

9 Years Old!Happy Birthday Drake Rayden!Today you are nine! Almost two whole hands!My goodness the journey you have been on.Daddy and I love you son. You and sissy have taught us so much about faith in our Father and wal

The Night Before

Tomorrow we wake up to a nine year old little miracle boy.A little boy that came home not even 4 weeks old on hospice…Terminal diseases do not play fair.His years have been hard fought…Painfully gained..But there is so m

Costly Obedience…

Friday morning we had just finished a call. Eric and I were in the middle of talking to the kids about how faithful their Heavenly Father was. The goodness and love we saw on that zoom was hard to put into words…The peop

EmetAbba

Some days I am still shaking my head…How can we be here?…there is no way this will really happenJust another closed door…Just another stalled effort.But we have come so far…And yet…we have such a ways to go.May the God o

On the Outskirts

There was a time when the Israelites finally came through the desert. The 40 year journey was coming to an end. A time when they could smell the change in the air. Feel the shifting in the wind. And, with their own eyes.

Today Is My Birthday!

Today is my birthday, and as Drake and Vivian's mother, I find myself asking for the same thing every year. "Father, please..."

Grateful...

I don't know if I have ever been truly grateful for time. When you are young, all you think about is growing older. When you are older...

Let thy Food be thy Medicine

"Let thy food be thy medicine, and thy medicine be they food." - HippocratesDrake and Vivian went through years of trial and error when it came to their diet. Unfortunately, for NKH patients, there is no medically direct

The First 24

The hours after Vivian's birth was a bit of a blur. We had decided to induce her around 39 weeks and three days due to me being dilated, and the now known genetic abnormalities that laid hauntingly in our genes. My OB ha

The Day Before...

As we were going through our school day yesterday, my son asked me "Mom, were you...right now...were you in labor with Vivian?" I paused a minute to recall what the day before Vivian's birth looked like as I hadn't reall

Vivian...alive; lively, bubbling with life

I typed in my search bar early this morning.."What does the name Vivian mean in the Bible?"....The search populated and it caught me with such sweet overwhelming assurance of Father's goodness...Wikipedia: Vivian means .

Failing FORWARD...

I avoided this day for weeks... I wanted so badly for him to be able to communicate, to show us something, to PROVE he was in there. In there the way we know he is, and finally to be able to show others his voice. I even

Vivian Update..Mother’s Day Evening

I am normally full of words… words that help make sense of things that have happened…words that bring understanding….words that I feel make things more clear.This weekend I am still trying to find those words…I can expla

Living in the Unexpected

Eric and I knew raising multiple children were going to be eventful. Raising five children, two with terminal diagnosis, is on a different

Jesus Moment in the ER

She looked at us and then with a exhale stated, “ I am just going to ask..." "Yes ma’am", we replied, not fully knowing what we were agreei

Vivian is home..

All Vivian’s levels stayed in really nice places after her infusion of red blood cells last night. Her ECG came back normal, and other than

Prayer Jar

Today, as I did my devotional I was reminded of the need for prayer.Honest, humble, expectant, desperately seeking Father’s will...prayers.I am often guilty of underestimating the power in prayer. The direct line to the

Why Not Me?

Thanksgiving was this past week and like many of you, we are still recovering from all the wonderful food. This time of year is so fun as we know that certain dishes are only made close to the holidays. The kids and I en

Seven...The Year of Completeness

Your seventh birthday, Bubby. It is hard to understand all your little seven year old body has lived through. Last year when your heart..

His Peace

27 “Peace…I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.” - John 14:27Peace - (noun) - a state of tranquility or quiet. Fre

Being Comfortable in the Uncomfortable

If I could explain the last year in one word it would be …uncomfortable.It is hard to explain all that we have walked through over the last 15 months. After almost 7 years of terminal diagnosis, you would think uncomfort

O2 Crisis and Canceled Church Plans

Today we got up at 5:30 am, started our normal routine of getting showers, kids up, dressed and fed, Drake and Vivian’s meds and food made for the next few hours. Then Drake and Vivian up, cleaned and dressed for church.

Calm After the Storm

Our sweet girl finally started to settle around Saturday evening. Thursday and Friday the seizures had slowed to not consistently coming but to only clustering. Vivian started seizing Monday night, with no warning, every

Dead End Roads...

We took Vivian into the ER Wednesday night to have her evaluated. Her body was on day three of fever, hundreds of seizures, and throwing up. We had tried everything we normally do to get her system to reset, but nothing

It started Monday night...

Vivian started to seize ever 20 minutes shortly after I got home Monday night. I had meetings all day surrounding the foundation, growth meetings, networking meetings. We are constantly meeting to try to expand our reach

Update on Vivian..

Vivian fought hard all day and the seizures have been so relentless. She spiked a fever of 102.3 this am and we have done medicines and cool baths to try to get it to come down. Her little heart rate will spiked up to th

Merry Christmas

In 2016, I stopped sending Christmas cards. Although our family had enjoyed this for years prior, I could not bring myself to take the professional family pictures that year. There is something about the word terminal be

Life is but a Vapor...

Yesterday I was sitting with our PT discussing some pretty severe issues we are seeing with Drake’s scoliosis and his poor little legs. His left leg is swelling and we aren’t sure of how or why. We are reaching out to ou

The Crippled Lamb and Crying Over Hamburger Meat

Ever heard the saying “don’t cry over spilt milk”... Well, last night I cried over hamburger meat. Before you try to guess, no I am not pregnant. And besides, I was never a super emotional pregnant lady....I was the "nau

You Made It To Three Little One...

Today is Vivian Faye’s Third Birthday...a birthday we were told she would never see. A birthday a few days ago, we were not sure if we would be celebrating hooked up in the hospital to all the cords and watching her seiz

Update: 20 Days Post-Cardiac Arrest

It has been twenty days since Drake’s heart stopped...unexpectedly....and twenty days since we got to witness our Lord and Savior move mightily to bring him back to us.If you missed reading about that miracle go to our M

Medical Miracle

It has been 10 days since our lives drastically took a turn. I think now that the dust has slightly “settled”, we can all start to try to process what in the world has happened. One thing that I am 100% certain of.... la

Update 12.17.2020

Update 12.17.20 My goodness what a busy few months it has been. Kids’ schooling, Drake and Vivian med changes, my school schedule, foundation work, research projects, new exciting upcoming project ( more to come on this

Lifeline Partners Spotlight: THE BURGESS FAMILY

GOD HAD EQUIPPED US FOR THE JOURNEY HE SET BEFORE US We first met the Burgess family a few years ago when our paths crossed at church. When their son Will was

July 1st Update

Update July 1st, 2019 Drake is finally starting to get back to his baseline for seizures, thank Jesus. The last few weeks have been really hard. We fear Drake is going back to the cycle of walking on egg shells every few

Your Carolina with Jack and Megan Appearance

We are very grateful for the opportunity to speak with Jack and Demarcus on Your Carolina to help spread awareness for Drake and our Saving Drake Campaign to fund the Gene Therapy Project for NKH. Please check out the vi

May 30th Update

WE ARE SO CLOSE, WITH ANOTHER MATCH TODAY!!

May 29th UPDATE

We are SO CLOSE!! Just $10 more dollars could help us get UNDER $10,000 of our $70,000 to start our Gene Therapy! Please donate today!

May 24th UPDATE

Please watch our video to check out our latest updates.

May 23rd UPDATE

May 22nd UPDATE

20% in the FIRST 24 HOURS!!!

We are blown away and can't thank you enough for all the shares and the donations. Please KEEP SHARING! It is working!! WE HAVE TO MAKE IT TO $70,000 TO START THE GENE THERAPY PROJECT!

TODAY IS THE DAY!

Please watch our video to see our exciting news about an amazing opportunity God has opened up for Drake, and other children suffering with NKH.

Buried Alive

As I sit in my bathroom floor and type… if I am being honest… so many thoughts, and emotions are running through my head. The last few weeks, and days to come, are so full of final details, and late nights, trying to ens

May 2nd - NKH Awareness Day

Today is NKH Awareness Day. It is a day that families affected by NKH across the world rally for awareness and funding to help bring change to this terrible disease. If I am honest, we have been so busy with Drake, schoo

New Treatments

Drake is doing well. We are still seeing good seizure control from the Amoxicillin (antibiotic) which is a complete God thing. A few weeks back, Drake was hospitalized due to catching two respiratory viruses that made hi

How Great Thou Art

We have been home from our second hospital admission for about 6 days now. Drake had to be admitted, twice in two weeks, due to complications from two pretty mean respiratory viruses, and him not being able to maintain h

Biochemistry

Drake is doing well. We brought him home on an antibiotic in a continued effort to starve off any bacteria that may, or may not, be brewing in his lungs. He slept for eight hours straight when we got him home from the ho

Talks of Coming Home

Drake had a good night. He is very weak, but that is to be expected considering all he has been through. The labs are all coming back in and all are showing pretty good. We brought Drake into his PEDS doctor due to his f

Round Two - Second Hospitalization in a Week

We had to admit Drake to the hospital again last night due to his white count being very elevated on Saturday when we took him into the pediatrician. Drake had been healing really well, and we were very excited to get to

First Day Home

Drake is struggling a bit. His seizures have been coming about every 10-15 minutes all day. I will take him to our pediatrician tomorrow, for his follow up appointment, to make sure nothing is settling in his chest. It i

Coming HOME!!!

Look who is coming home today!!!! Praise the Lord!! We have all our equipment in tow and they are letting us care for him at home under doctors over seeing. Thank you Jesus! #DrakeRayden, #NKH, #FirstVirus, #Toughweeksah

Day Four at the Hospital

Drake had a good day yesterday. Sorry we didn’t write, as our day was full. It was right around 1 am before we got settled enough to try to sleep for a few hours, before our 5 am medicines. Right now, Drake’s temperature

Hospital Day three

Monday Morning Update on Drake: I wrote our doctor early this morning, after Drake had gotten his 5:00 am medicines. Our glycine labs are able to go out with the currier now that the lab is open back for the work week. T

Day Two At The Hospital

We were hoping to go home today, but it doesn’t look like that is going to be a possibility. Drake is still struggling to regulate his oxygen, and he is dealing with all the side effects of the viruses, compounded by the

Hospital Update

10-20, 8:45 pm Update on Drake Drake's oxygen is stabilizing. We thank you all for the prayers and texts and messages. I am sorry we have not been able to respond to all, but once again God has given us the strength and

The Unknown

Drake is fighting a virus right now. He started Wednesday with a slight fever, yet his seizures have been very calm. Sadly over all, he has been very out of it. We woke yesterday and his fever had broken, or so we though

Ponce Realty Group

We want to say a massive thank you to ALL the realtors at Ponce Realty Group. This amazing, amazing group of realtors collectively donated $2,800.00 to the Drake Rayden Foundation through the months of April to July! We

Please Fight For Me

My mom brought over a book of poems I had written when I was probably in middle school.. I have to say it made me laugh because I had completely forgotten about them, and I was the kid good at math..not english... so it

Faith, Hope, Cure for NKH

In the past ten days we have lost two children to NKH. Two beautiful children ….gone…to a preventable death…… Two families have suffered the worst loss any parent, or child, could experience. To an NKH community of less

The Sandbar..Update

Drake is on day two of still seizing. He did have a few times last night that he was able to sleep. He only had about 5-7 seizures throughout the night, and then this morning he started up again, having one about every 1

Living with NKH

I have so many that ask what living with NKH is like.... It is this... Sunday’s used to be naps and rest... and in some ways it still is... but it also is making sure we get blood so that we can get it to the lab first t

Disney and Deadlines

We all just came off our first family vacation to Disney World. The grandparents surprised us with a family trip and it was a wonderful time to disconnect and just be “silly” and fun with our littles. We were a little un

Another Step of Faith

Everyone is doing well. Drake has had some highs and lows these past few weeks. The lows are hard, as they remind us just how fragile his little body is…but the amazing thing is.. the highs are becoming so, so sweet. Dra

DRF Cares

The Drake Rayden Foundation fights for better treatment for NKH through raising funds and encouraging research. We also want to be a pillar of support for the families directly affected by NKH. This is Lori Harris, and h

Future Plans

We wanted to update on Drake’s progress and the foundation’s direction. First, let me say… thank you…..thank you for all your prayers, your cards, photos of you wearing our t-shirts, setting up times for us to come share

Lemonade Stands

Our kids, and their friends in the neighborhood, have wanted to do something to have their own "fundraiser" for Drake... I came home from therapy the other day with Drake and I was met in the cul-de-sac with lemonade and

Using the Insignificant

Eric and I just came home from a cross country drive up to Notre Dame University in Indiana. We spoke with researchers, directors, and scientist all day Thursday, and then drove to Chicago Friday, to speak with a neurolo

Another Child

Drake is doing well. He has calmed down from the seizures we were seeing the week before. His weight has increased, so we are seeing some seizure activity right now, but after some adjustments on our end, we should be ab

I saw God Today...

Drake is struggling a little right now… we made an adjustment to his meds where we dropped a WHOLE dose of sodium benzoate (artificial preservative we have to give him to keep his glycine from throwing him into a coma) w

Growth, baby steps, and hope

Drake is doing really well right now. He is still loving his new physical therapist, and the improvements we are seeing in his physical and mental awareness are so wonderful. He is starting to use his body in ways that w

Fresh Eyes

Drake started a new physical therapist (PT) last week. Our old PT we loved and had been with us since he was about 3 months old, but due to some health issues, she had to stop practicing and focus on taking care of herse

Stepping Out of the Boat

The past two months have been truly refreshing. We stopped traveling to Charleston for a bit, we slowed down on all the outside therapies due to the holiday schedules, and we have not made major adjustments to Drake’s ci

Christmas Cards

Christmas cards are always a wonderful surprise and we all anticipate the mail each day..

Birthdays

The last month and a half has been so busy. We finished the run for the foundation, prepared for our trip to Florida for the week of two a day hyperbaric treatments, all while continuing neurofeedback training for Drake

HyperBaric Treatments

Today is day four of Drake's hyperbaric treatments here in Florida. Hyperbaric oxygen treatments have huge benefits for getting more oxygen to the brain and helping to restore brain tissue and connections, also to help h

First Birthday and Hour Glasses

Drake turned one two days ago…. it really is hard to believe…. I normal do a huge first birthday for our children just because I love birthdays and the first one just seems super sweet…. Drake’s day was precious and alth

No Stone Unturned

We are on our way to Duke to meet yet another neurologist. We left this morning around 5:30 am and hope to be home later this afternoon. We scheduled this appointment 6 months ago and are finally getting to go to see yet

Getting Started

When God chose us to be Drake’s parents 10 months ago, we had no way of knowing what lied ahead…..All we knew was what little the doctor’s knew, how fatal and severe this disease was, and our convictions that for as long

Update From Charleston

Drake’s appointment went really well. We got to meet with the new neurologist and it was so, so nice. The story of how we got down here is pretty neat and I will have to save that for a later date, but our neurologist at

Charleston Bound

We are going to visit a Pediatric Neurologist in Charleston today. We had to postpone the last appointment because of our latest treatment “trial” and not wanting to add too many new things to Drake. We are excited for a

Base Levels

Right now we are trying to get base labs for Drake so that we can hopefully start our trial…end of next week. Drake is doing well, he has had some harder days

Five Days

Five days…. Five days is what we had this time….five days that we were able to enjoy the hope and the possibilities of a new treatment for Drake…an all natural treatment that would finally allow his body to heal…..five d

Dedication

Drake is doing well these past few weeks. We are seeing some strong seizures right now that we are trying to understand. We did lower his Keppra about two weeks ago and he has done fine, but the past 4-5 days the seizure

Hitting Bottom

Drake’s seizures have hit an all time high…. He started Sunday seizing every 10 minutes or so and this continued until 10 pm Sunday evening when we had to give him a rescue med to ease them so he would sleep. Monday morn

And Then The "Fork"...

Drake started seizing yesterday (Sunday) around 1 pm….. we have seen more seizure activity since we have been here but due to all the changes, this is to be expected. Drake’s system is so sensitive that when he has the s

Choosing Life

Thank you all so much for your prayers for Drake and our family. We think we are out of the valley and Drake’s seizures are starting to calm. He only had 10 all day yesterday and his awake times were so good. He is eatin