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Life with NKH


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...
Tarah OSullivan
Mar 105 min read
188 views


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..."
Tarah OSullivan
Dec 2, 20242 min read
107 views


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...
Tarah OSullivan
Nov 28, 20242 min read
403 views


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,...
Tarah OSullivan
Aug 26, 20248 min read
398 views

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...
Tarah OSullivan
Aug 21, 20244 min read
346 views


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...
Tarah OSullivan
Aug 12, 20246 min read
1,194 views

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...
Tarah OSullivan
May 13, 202410 min read
1,023 views


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
Tarah OSullivan
May 6, 20249 min read
803 views

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
Tarah OSullivan
Apr 16, 20246 min read
309 views


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
Tarah OSullivan
Apr 16, 20244 min read
291 views

Prayer Jar
Today, as I did my devotional I was reminded of the need for prayer. Honest, humble, expectant, desperately seeking Father’s will......
Tarah OSullivan
Jan 24, 20242 min read
87 views


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...
Tarah OSullivan
Nov 27, 20236 min read
460 views

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..
Tarah OSullivan
Oct 12, 20233 min read
760 views

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...
Tarah OSullivan
Sep 14, 20234 min read
329 views

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...
Tarah OSullivan
Jul 14, 20234 min read
846 views

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...
Tarah OSullivan
Mar 5, 20235 min read
701 views

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...
Tarah OSullivan
Jan 18, 20234 min read
575 views


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...
Tarah OSullivan
Jan 13, 20235 min read
1,525 views

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...
Tarah OSullivan
Jan 12, 20233 min read
912 views


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...
Tarah OSullivan
Jan 11, 20237 min read
1,389 views

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...
Tarah OSullivan
Dec 26, 20221 min read
70 views


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. ...
Tarah OSullivan
Dec 8, 20225 min read
1,079 views

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...
Tarah OSullivan
Dec 5, 20226 min read
325 views

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...
Tarah OSullivan
Aug 21, 20226 min read
671 views


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...
Tarah OSullivan
Aug 9, 20227 min read
1,455 views

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...
Tarah OSullivan
Jul 30, 202211 min read
4,751 views


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,...
Tarah OSullivan
Dec 17, 20204 min read
166 views


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...
Tarah OSullivan
May 2, 20193 min read
162 views


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...
Tarah OSullivan
Dec 7, 20184 min read
137 views
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...
Tarah OSullivan
Nov 4, 20186 min read
110 views


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...
Tarah OSullivan
Oct 30, 20184 min read
40 views


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...
Tarah OSullivan
Oct 29, 20186 min read
93 views


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...
Tarah OSullivan
Oct 28, 20185 min read
33 views


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,...
Tarah OSullivan
Oct 25, 20183 min read
10 views


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...
Tarah OSullivan
Oct 24, 20181 min read
7 views


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...
Tarah OSullivan
Oct 24, 20183 min read
11 views


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...
Tarah OSullivan
Oct 23, 20182 min read
8 views


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...
Tarah OSullivan
Oct 21, 20184 min read
25 views


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...
Tarah OSullivan
Oct 21, 20186 min read
27 views


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...
Tarah OSullivan
Oct 19, 20184 min read
20 views


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...
Tarah OSullivan
Jul 24, 20182 min read
95 views


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,...
Tarah OSullivan
Apr 29, 20185 min read
76 views


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...
Tarah OSullivan
Apr 9, 20185 min read
64 views


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...
Tarah OSullivan
Mar 18, 20184 min read
112 views


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...
Tarah OSullivan
Mar 7, 20184 min read
81 views


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...
Tarah OSullivan
Feb 26, 20183 min read
67 views
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...
Tarah OSullivan
Feb 18, 20174 min read
47 views
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