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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Biochemistry

October 30, 2018

 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 brewing in his lungs.  He slept for eight hours straight when we got him home from the hospital yesterday.  We are able to continue foods and medicines through his g-tube, that is one of the blessing of having this as we didn’t have to wake him, as he needed sleep so badly.  We woke up to him this morning looking around and very aware.  What a blessing it is to see his little eyes open and focused.  His seizures have been very calm.  He only had maybe five to seven yesterday, which is such a blessing.  

 

We were hoping to get our glycine level back today from the blood drawn on Saturday evening while we were in the hospital.  I emailed our metabolic doctor, and she informed me that they didn’t have the sample any where at their facility.  I thought that was odd being that it should have caught the Monday morning carrier.  After some digging, we were sad to find out there was a hiccup, and apparently the blood we drew was coded wrong, so it never left the lab.  It was still sitting in a “hold” pile waiting for further instructions.  

 

This was not the results we had hoped to get, but we have to be thankful that the sample will go out tomorrow, and that it did not get thrown away.  Once we get his glycine levels they will be five to six days old…..but we have to try to use them…. it is all we have. 

 

We came home yesterday to a package that had come in the mail.  A package that I have been anxiously awaiting….but, ironically, I was terrified to open it.  

 

Eric and I, along with our family, have been praying about a decision I have felt like God was calling our family to pursue.  I say our family, because it would affect all of us and take everyone working together to make it happen.  This decision will alter our daily activities, quite a bit, and possibly off set the delicate balance we have here at home since Drake has been born… But…. it is a call that we feel God is leading… 

 

Yesterday, we received in the mail…. my acceptance letter to go back to school and pursue an undergraduate degree in biochemistry, in hopes of obtaining my PhD in molecular biology and/ or chemistry.  I have to say, the thought of extensive studies, in a highly evolving biochemist world….. sounds crazy….. but… a lot of times.. God calls us to do the crazy…  

 

One day, months ago, while we were worshiping at church I felt God start this conversation…. I have been begging God to use me with Drake’s disease.. “teach me, show me, use me… please show me how to help Drake, and put a stop to this disease, Lord”.  Then He whispered..” Do you trust me?”… 

 

The next few weeks I wrestled with the pull to go back to school.. not to gain the ability to treat patients, but the ability to be in a laboratory and see the results and test the theories…God has given us all this information from watching Drake daily and how his body responds, but I always feel like we are watching from a window, never truly understanding what we are seeing.  Then the thought of finally having some in-depth understanding of chemical exchanges and the human body with all its amazing properties and functions… but, then the fear kicked in… I can’t go back to school… I am a stay at home mom of four children.. one of which is terminally ill.  I tried to argue with God… but He always knew how to push me past my fear…

 

Me: “God what about my family.. how is this going to shift everyone’s load?”

God: “ My grace is sufficient.”

 

Me: “But, God, you are talking about a LOT of school here… what if something happens to Drake before I get finished?  I am already so far behind…”

God: “ What if it does?  … Do you still trust me?”

 

Me:  “But what if I can’t keep up…what if it is too hard.. too much, too many hours, too many details?”

God: “My strength….not yours…”

 

Me:  “How will we pay for all of this?”

God: “I will make a way… don’t I always?”

 

Me:  “What am I going to be able to do… I am just a mom, not a scientist.”

God: “What more CAN you do because you are Drake’s mother.”

 

Me: “Father… what if we set all of this up, all the people, all the money, all the schedules to take care of our children while I am in class .. 

what if we set all these pieces in motion ……. and I fail…

God: “What if I open every door for you to lay your steps… 

                                     and you don’t have enough faith to try?”

 

God: “Do….you….trust….Me?”

Me: “Yes, Lord…I trust you.”

 

I stepped out in faith back in August, and yesterday I received my acceptance letter… to a journey I have no idea how it will go, or how it will end… but I am going to trust He will use it for His glory. 

 

Please pray for our family as it will be an adjustment.  January I will begin.. good Lord willing.  Please pray for discernment and guidance as we navigate all the details.  Please pray we stay in God’s will.  Please pray our children, and our marriage lack nothing from the new load.

Please pray for His wisdom and strength. 

 

Let our faith be bigger than our fear… 

 

All our love, 

Eric, Tarah, littles and Drake 

 

Joshua 1:9

“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”

 

2 Timothy 1:7

“for God gave us a spirt not of fear but of power and love and self-control.”

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