Faith, Hope, Cure for NKH

Blog Post

July 8, 2018

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 thing Monday morning in hopes of getting a level o...

December 2, 2017

     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 down in Charleston weekly sometimes biweekl...

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...

June 3, 2017

    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 these past three weeks.  We have been removing most of all his supplements and getting him on the bare mi...

June 1, 2017

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 days before we were scrambling again tr...

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...

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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. 

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2607 Woodruff Road,

Suite E, PMB 352

Simpsonville, South Carolina

United States, 29681

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