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 Drake, and all children, affected by NKH. 

© 2017 by Drake Rayden Foundation.

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Mailing Address:

2607 Woodruff Road,

Suite E, PMB 352

Simpsonville, South Carolina

United States, 29681

July 1, 2019

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Our goals are big.....but our god is bigger.

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Hospital Day three

October 23, 2018

 

 

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. They are to be delivered to the facility hopefully by this afternoon. It is about an hour physical drive time once the labs are collected from the hospital. 

 

Once there, the large units that measure 20+ amino acids (a large amino acid panel is run, and glycine is one of the amino acids in that panel) are prepped and put into the machine that then takes about 7 hours to run ONE patient sample. We have actually driven down, last year, and met the lab director, and got to tour the lab in our constant attempt to understand the process for getting glycine measured. In order to know how to get a better method for Drake, we have to know the current process and hurdles. 

 

I was trying to see if we could push the sample from yesterday in front of the sample that we drew on Saturday to make sure we got the fastest, most accurate reading of Drake's current glycine levels. Drake is trying his best to fight these two mean respiratory virus, and we have to get his glycine in a better range, because right now all three deterrents are putting a major strain on his little body.

 

I was disheartened when I saw her quick response:


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Tarah, 
I have let the lab know about the sample (and the frustration of not having access to labs on the weekend). Unfortunately our machine is down and they are working to get it back up and running. They will have an update for me later this morning. I know they will do their best to get it processed as quickly as possible, but there is also another emergency sample that will need to be processed first once the machine is up and running. I will keep you posted. 
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Please continue to pray.... we know God has a reason for the set backs... 

- E and T

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