2026
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
2025
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
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
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.
2024
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...
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
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
2023
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
2022
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
2020
2019
2018
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
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
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
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
2017
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