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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No Stone Unturned

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 hospital so we are thankful for the opportunity.  Please pray that the neurologist is open to our non-pharmaceutical mind set and has great direction to offer.  The neurologists that Drake see already are great men and have brought new treatment and great opportunities into our journey.  We are excited to see what this neurologist may possibly add to the mix as well. 

 

  Drake right now is doing extremely well.  We still have around 5-8 seizures a day, but they are much less severe and his awake time have tripled in the last week and a half.  He also has regained some of his strength and desire to move….over the last few months Drake had lost the “will” to move…he quit initiating movement and that was hard to watch.  Now, everyday he is surprising us with his effort.  We also have learned through our treatment with neuro-feedback (treatment in Charleston) that Drake’s brainwaves pick up tremendously when we speak and encourage him.  Eric and I have always felt that Drake heard us, even in the PICU when he was not taking any breaths on his own….we would talk to him constantly..tell him how strong he was and how much we loved him and how much God loved him more.. we never wanted him to fear he was alone or fear to go home if God was calling him…and even now because of his limited movement his responses are harder to tell unless you know his cues… It is really neat that God has given us “eyes” into his little brain through the training lessons to see what helps him and watch his progress on the screen.  A wonderful affirmation for what we have felt for months deep down… 

 

  Another HUGE praise report……. we have been able to effectively LOWER his sodium benzoate dose…..ALMOST CUT IT IN HALF….. by continuing to trial (and error) the cinnamon.  When this last effort failed…again… we just kept hearing that scripture in our heads…. “..in due season we will reap, if we do not give up..” Galatians 6:9… so we told the devil no…. no this has to work … and we kept digging and trying and looking at our notes and correlating labs to symptoms….and we think we have found a dose of cinnamon, and schedule, that effectively works for Drake.  WE EVEN HAVE LABS TO PROVE IT! Which is huge! Huge!!  God brought this cinnamon into our view months ago but we have struggled trying to make it work, and every time it would fail, it left me wondering what was wrong…what we missed…or if we were nuts for trying to find something natural to cope with this terrible disease….The devil loves to make me doubt Eric and my “ability”…”who are we to think “we” can find something when scientist around the globe are doing this day in and day out and they are having a hard time”..”what makes us think we have a chance”… the devil used to make me stumble with this doubt and fear… but now.. now that I am gaining strength…not so much strength but perspective… I realize that he is completely correct… if I relied on Eric and my strength or knowledge or insight.. we would fail….every time..  but what the devil hates is that we hitched our wagon to God’s strength and knowledge and power so all the doubt and fear that he throws gets easier to extinguish the more we trust …. Trust that God is going to use Drake for His glory…trust that God knows how to heal this disease because He created the very cells that are causing it…trust that when and if it is His will… Drake WILL HEAL..the rest…doubt/fear/exhaustion/pain/tears…instead of them being stumbling blocks… God is allowing them to be stepping stones for our family…

 

    Please continue to pray for Drake’s healing and the unique path we are on.   As I said we are getting stronger everyday, but we are human and some days are just going to be hard.  Please pray for the cinnamon and us finding a dose that equates the sodium benzoate dose, because our ultimate goal is to remove Drake from all synthetics and only give natural supplements.  Please continue to pray for the Drake Rayden Foundation…we are over whelmed by the support from families and companies locking arms with us to help us obtain the funds needed for research.  Pray for the direction and timing for those funds.  We are discussing multiple research directions and institutes.  We do not want to make a hasty decision.  We want to do what is God’s will…. He will handle the rest.  Thank you all for paying over us and for walking with us.  We are so thankful… so so thankful for you. We love you and we will update very soon.  I am sorry I have not been as frequent with the latest updates due to the foundation and all the start up labor.. some nights sleep is a sweet memory but we are not complaining… everything in its season. 

 

We love you all,

Eric, Tarah, littles, and baby Drake

 

Psalms 62:8

“Trust in Him at all times, O People; pour out your heart before Him; God is a refuge for us. Selah” 

 

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