Eric and I just came home from a cross country drive up to Notre Dame University in Indiana. We spoke with researchers, directors, and scientist all day Thursday, and then drove to Chicago Friday, to speak with a neurological scientist/biochemist researcher there. We left our four littles at the beach with their grandparents in South Carolina, and drove 14 hours to put ourselves in front of these researchers doing the work on our son’s disease, NKH.
For those that do not know our story, our son, Drake Rayden, was born about a year and a half ago with a terminal illness. A very rare, genetic disorder that currently has no cure, and no real treatment. We had no “signs” it was coming, he was perfectly healthy, my pregnancy was normal, and the delivery played out the same as it had with our other three children before him. But… three days after Drake was born, a very scary journey began… Drake started presenting very poorly, and we had to take him into the hospital, where he spent the next four weeks in PICU, on a ventilator, fighting for his life. This was also where we learned that Drake suffered from a rare disease called NonKetotic Hyperglycinemia, or Glycine Encephalopathy. His little body does not break down glycine (an amino acid) effectively, and it builds in his brain causing lots of uncontrollable seizures, also with the chaos happening inside his cells… the cells live in a state of “starvation” and quickly die….making the progression of the disease very lethal, very fast, and very fatal… Due to only 500 in the world currently living, the research is horribly underfunded.
So… we took our beautiful, baby boy home… at one month old….on hospice to pass in his bed surrounded by our other three children… as the hospital told us, with pain in each nurses’ eyes… there was nothing else they or we could do… the odds were to high…his time was too short… and nothing short of a miracle would give us more time….
Well, God gave us our miracle… God gave us more time… Drake is now 18 months old. Drake struggles everyday, and has to fight to survive… and God has taught us more about perseverance and strength through our little baby, than I ever knew was possible. Eric and I prayed for months begging God for direction for Drake’s care… and begging for direction on how to help him… in August of last year, after much prayer, we started the Drake Rayden Foundation. At the time, we had no idea what the future held… we knew we were feeling called to find better treatment… we knew that the only way to help Drake, and other children suffering, was to start fighting for better research… and that it was going to take funds… But on this side of medicine, where there is no research…there is no government funding due to lack of children affected….…how in the world do we get there??……. so we prayed…. A LOT…. and asked you all to pray with us….. and God started laying out bread crumbs……and we started blindly following….
From the end of August ’17 when we started the foundation, to now, April ’18, God has done some amazing things. We have traveled the southeast and northeast in search of finding the right people… We have traveled from the tip of Florida to the Great Lakes to speak with different research facilities and look into different therapies to balance Drake’s body. We just sat through meetings, just this past Thursday, and spoke with a research program at Notre Dame to help further the research being done for NKH… this is just the first of three facilities we hope to support this year….
I say all of this because….honestly….we are blown away…. God has raised a mountain of a community around us and
WE COULD NOT HAVE DONE ANY OF THIS WITHOUT YOU…..
Those of you that know us know there is nothing special about us… we are a young couple in our early 30’s… we have four young children, all 8 years old and under… one of which was born with a terminal illness….we have no medical background….no precursor to illness to prepare us…. we are not wealthy people…. we are not extremely intelligent…I quit pursuing my carrier 9 years ago when we had children so I could focus on supporting my husband and raising our family….. I say all this to simply point out that…. if you can’t see God’s hands here… you are missing the big picture…..we are average people….walking an extremely difficult path…. with an extraordinary God that promised He would provide a way when trouble hit… He would carry you through trouble with His mighty hand…. and that He would never give you a situation….that He wasn't ready to prepare you for the road ahead…. Our trouble hit…our bottom fell out… but the amount of support you all have shown us is simply inspiring…. God has used each of you in ways to help keep us motivated, or lift us up when we were struggling, or encouraged us when we wanted to quit…. you have helped us host events, and signed up for monthly contributions, bought t-shirts… the list goes on and on…. thank you….. THANK YOU from the bottom of our hearts……
God has burned a new fight and vulnerability in my soul like I have never known…. I have never wanted to fight, until my last breath, to find hope for these children….our child……at the same time… I have never been more blatantly aware that if God doesn’t open the door, or if He doesn’t clear the path….we will have nothing….IT IS ALL UP TO HIM… every detail, every victory, every set back…. they are ALL apart of His meticulous plan…. please pray with us that we stay in His direction and His will for our future plans…. please pray that His will is clear above all else…pray that we are protected from any stumbling blocks the devil is going to try to set up before us.
We couldn't have done all that we have without your love, prayers, and encouragement. Thank you…. we know the mountain is high ahead of us…. but we also have a determination that comes from the ONE that moves mountains, that will not let us stop…. and we WILL tackle this mountain with God’s lead, and your continued support…. we love you all dearly…
To God be the Glory….forever and ever…
Love,
Eric, Tarah, littles, and Drake
Isaiah 41:10
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”