Faith, Hope, Cure for NKH

Blog Post

October 15, 2017

  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 although we didn’t do the traditional birthday “pa...

September 19, 2017


   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 another specialist at a very esteemed...

August 2, 2017

    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 as God kept Drake’s heart beating we would b...

July 18, 2017

  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 home has trained under the new neurologist (e...

July 14, 2017

   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 fresh direction or just the possibility of...

May 13, 2017

   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 seizures have really kicked up and they frustrate h...

April 7, 2017

   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 morning he started very similar and ended the sam...

April 3, 2017

    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 slightest change (constipation, sleep schedul...

February 18, 2017

       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 eating like a little champ right now and we...

Please reload

Our Mission

The Drake Rayden Foundation, was founded by Eric and Tarah O'Sullivan, to bring hope through the gospel, raise awareness and funds for better treatment for NKH, and care for special needs families. 

  • YouTube
  • Twitter
  • Pinterest
  • LinkedIn
  • Instagram
  • Facebook
  • Amazon

Mailing Address:

2607 Woodruff Road,

Suite E, PMB 352

Simpsonville, South Carolina

United States, 29681

© 2020 by Drake Rayden Foundation.