Faith, Hope, Cure for NKH

Blog Post

May 17, 2019

  

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 ensure we are ready for Monday…

  If you have...

December 7, 2018

   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 his breathing really strained.  He had to...

October 29, 2018

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 fever getting back up on Saturday, and while th...

August 29, 2018

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 are incredibly humbled by their support.  We kno...

July 24, 2018

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 than 500 worldwide is so very tragic....

July 15, 2018

  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 15-20 minutes.  He seems to be slightly more a...

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...

June 15, 2018

  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 unsure of how Drake would do with the heat, and...

May 23, 2018

  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.  Drake is gaining more and more strength with hi...

March 7, 2018

  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) which is a HUGE praise report…he is down to only...

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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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Mailing Address:

2607 Woodruff Road,

Suite E, PMB 352

Simpsonville, South Carolina

United States, 29681

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