Every season we walk through right now brings a new level of endurance. The next level of advancement, comes with a new level of trials.
The only description I can think of to try to explain our days is if someone told you that you had to journey through the sun to get to the end. You know that going through the sun is the path, and you know you have to commit fully to make it through the journey, but with every step forward, you feel the scorching heat and the weight of the carry.
We know God has called us to walk this path. The blinding light from the sun that He has meticulously laid as both a provision and a protection. The steps that only reveal themselves once the last step has been taken.
The physical demand to counter the pressure, the mental focus to cast down the enemies' flaming darts, and the endurance that is required to continue to press forward when your body is screaming to turn back, rest, and your mind wants retreat... is only the work of His hands and His endurance...not our own.
But on heavy days, when we beg for rest, we bow our heads and hear Father whisper..."My child, I know you are tired...but take the next step"...
. . . . . .
"Yes Lord...we are weary....but not defeated. We will continue to follow where you lead."
Vivian has been going through months of attacks on her little body. Nights so long they affect her days and wear her down. It is something new that we have not experienced in the past. She is calm and baseline during the day, but when the night falls, the screaming begins.
We lay both Drake and Vivian down around 8:30 to 9 pm, do all their night time prep, getting final meds ready, O2 monitors attached, and final positioning of their beds. Their final meds for the evening fall around 10 - 10:30 pm, like clock work.
And rest comes until about midnight.
Around midnight, every night, for almost 3 months now, Vivian has been violently attacked. Her mind begins to attack her body, and she thrashes and screams for hours.
Because of her disease and the metabolic disfunction, her brain starts a loop that we are trying everything in our power to break the new cycle. Natural supplements, pharmaceuticals, physiotherapy, swaddling, positional, head and breathing apparatuses....
Nothing has worked.
And she stays like this until around 5 am.... every..single... night.
Her legs have bruises where she has hit her heals on her shins, her ankles have cuts where her toenails have cut into her legs, no matter how many layers of socks we put on. We have started using long socks pulled over her hands to keep her fingernails from slicing her forearm during the attacks.
These attacks are the ones that send her into a fit that echos ear piercing shrills throughout the house. Our bigs upstairs come down throughout the night to try to help.
These are the attacks that break her little bones. We have began to put her leg brace on to try to minimize the thrashing and protect her susceptible leg.
Eric is pulling a lot of long nights... he is up with her 3-5 times a night and if she is really unsettled, he will bring her to her bean bag in the living room and sleep within arms reach of her on the couch to try to settle her.
The other night, Eric had just laid down and I could tell he was exhausted. I heard Vivian begin to scream again, so I went to try to let him rest. Vivian was so worked up when I got to her that she was stiff like a board, arching her body backwards in a C posture, thrashing and fighting in her crib.
All I could do was try to hold her and tell her she was safe. "Shhh, Shhh, you are safe....Mommy has you...shhhh....shhh...try to settle, you are safe baby....you are safe....just hang on."
She started to "unlock" and her body went limp for a few minutes. I slid to the floor, beside her crib, as I cupped her in my arms and tried to calm her racing heartbeat.
I couldn't help but cry out to Abba Father as tears streamed down my face. I rocked her in the floor as I prayed. "Lord....please....please give her rest, please calm her body....please stop these attacks....send your angels to surround her, remove the enemy from this place."
But NKH does not play fair.... it only knows one direction....and that is relentless suffering to all it effects.
Please, hear my plea. NKH will not stop this vicious attacking of children across this county until we have a treatment for it.
And NOW....RIGHT NOW we finally have a treatment.... a treatment that could CURE this disease..... CURE this disease with just one dose. A gene therapy that can correct the root cause of the disease.
And it is in its final manufacturing stages....
All that is left....the only thing between Drake and Vivian and the treatment is funding.
Funding that you have. Funding that you will never miss. Funding that could change a generation of families that are desperately trying to hang on to hope. Funding that is sitting in your bank account for a rainy day.
Please, please do something to help us. You don't have $760,000 to pay it all.... But maybe you have $1,000, maybe you have been blessed and you have $10,000. Maybe you know someone that has $50,000.
You can do so much more than you think.... if you only take the next step forward in obedience.
Nothing about our family is special, not one thing. We are as average as they come. But we refused to sit aside and let a disease ravage children, babies that do not deserve to live a life of suffering like this.... and we stepped in. And we keep stepping forward, every brutal inch, because we have to. Someone has to stop this.
And I am begging you...step forward with us. Every inch... if you only can donate $25 today, do that. And if Friday comes and you have another $25, do it again.
Every inch has been fought and gained together. Just do something. Because nothing is not an option. Pray with us and then turn your prayer into action.
Prayer without action is like us looking at a hungry child, praying for them and then sending them away hungry, when we have been blessed with the resources to end the hunger. How do we stand before the Lord one day?
Friends and family, if we fail here... if we do not find a way....if we do not generate the funding....the drug development stops.....
.....and the awful suffering continues.
Please hit your knees, find your feet, and then join our fight.
If you want to meet us, learn about our efforts, come. We are hosting an update event a week from today, September 22nd, Downtown Spartanburg. It is free to attend, all we ask is you register so we can have a headcount. Here is the link: https://www.drakeraydenfoundation.com/lucd-dessert-reception
Register right now before the distractions and excuses flood in.
If you can't come....give something. You may not have many resources but you have a dollar. What can a dollar do? It can show the next person that they have no excuse to not give their dollar. And you know what 760,000 one dollar bills look like..... A TREATMENT.
Help us. Help us share because it costs you nothing.
Pray boldly because we are to continually seek the Father, He is capable and He is faithful. But then give....no excuses...just obedience.
Because tonight when you lay down, when you tuck your babies into bed for sweet rest......
We gear up for battle.
And this will continue .....ever single night...until you join us.
