Vivian started to seize ever 20 minutes shortly after I got home Monday night. I had meetings all day surrounding the foundation, growth meetings, networking meetings. We are constantly meeting to try to expand our reach, learn new techniques, and better our platform.
I ended up getting home around 6 pm. I walked into Vivian having a pretty hard seizure. I was a bit caught off guard as Eric and I had talked throughout the day checking in, and although busy, the day seemed pretty uneventful. Something about the intensity of this seizure made me uneasy. We spent the next hour discussing our days, and checking over the notes of Drake and Vivian’s journals. We keep daily health logs for the two littles, something we have done since birth. The material is invaluable when we need to shift something in their medicine, and it paints a semi-clear picture of the direction we need to go.
Within the hour of our talk, Vivian had three more tough seizures that left her body pale and weak. At this point, I am really starting to get uncomfortable as this is starting to turn in a bad direction. One, even two seizures, in an hour is really a baseline presentation for our children. The lack of solid treatments for NKH, and the volatility of their disease, really makes for extreme highs and lows in their day to day. But a seizure coming every 20 minutes, consistently, and with the intensity she was presenting, meant we were off to the races in a direction that is almost an overwhelming wave of defeat. We knew we had to try to find where the break was, and correct it...quickly.
Drake and Vivian suffer from a metabolic, enzymatic disfuction caused by a single point mutation in their genetic make up. This compound heterozygous mutation causes the enzyme affected to be ineffective at doing its regulatory jobs in its pathway. This reveals itself in multiply organs across the body, majority effecting the brain chemistry. Vivian can be up, active, and working on physical therapy one morning, and 48 hours later be in a self induced coma. The tight rope we have to walk to keep the children out of the hospital is quite humbling to say the least.
Vivian’s seizures continued to increase in frequency and intensity as the night moved forward. Seizures increase with such force that causes her muscles to tighten and inevitable throw up.
When the medicines and nutrition starts to shift, it is very difficult to stay ahead of dehydration. Current seizure medications are not created to target NKH, my children’s disease. When you are a rare disease, the system is designed for patients to fund the millions of dollars needed for their disease research, to develop the treatments they need...so you can see how ineffective the system can be for the suffering children, and the energy required from a foundational level for the oppressive cycle to stop.
About midnight we had given all we could, and shifted the house to a make-shift critical care unit. Eric stays up with the kids at night, so I can pick up the day-shift to carry the medication planning and discussions with our doctors. I came downstairs the next morning to see Vivian’s
little pale, exhausted body, and her Daddy just inches in front of her manning his post. I honestly do not know how he juggles all he does in our home, but I am constantly humbled that God chose me to be his wife.
Our day continued much like the night had went, seizures every five to seven minutes, trying to keep enough medicine down despite what she was throwing up, so that we could try to inch her body forward. We are pretty confident that we are dealing with some sort of sickness, viral or bacterial at this stage, we have to treat the same.
My day was supposed to be full of getting the children’s nurses going, meds cared for, homeschool projects underway, and one of our directors were coming over to button up some of the final planning for an event we have in the background. We have been working on a partnership for years and in a few days, it will launch to produce the fruit we have all been prayerfully cultivating.
I spoke with our team that morning, and explained how the night had gone with Vivian. Seeing our children in a critical support mode has become the unfortunate normal for our home. Although we have had to become callused to it, I always try to be sensitive to others as it is no easy task to watch a child suffer the way Drake and Vivian do. Our call was quick and the conversation moved from the physical demands of the day to the emotional needs. My director asked if I needed sleep, or if we needed to push the meeting, as she understood and we would make it work whatever needed to shift. As much as my physical body wanted rest, I knew deep down, that this disease doesn’t get better without change, and that change isn’t coming unless we create it.
When you are spearheading the funding, research, and treatment needed for your own disease.... you don’t get to be broken by the process...... you just find the fight to keep pushing.
We agreed to continue as planned, and the day proceeded with the million moving pieces, on top of caring for Vivian’s critical needs. Our nurses are amazing, and they always help steady my feet. One thing God continues to do is bring the right help, at exactly the time we need it. It is part of the reason I know, He himself, is pushing the Drake Rayden Foundation forward. I have found myself, at my weakest, collapsing at His feet, begging Him to pass this cup from our home. Although He always crawls in the floor with me to meet me, He reminds me that He has placed a calling on our lives, and He will sustain us through it.
Sustainability.....this word has been one Father is ringing in my ears for the future. Our efforts at the foundation have truly been nothing less than miraculous, and just yesterday in the depths of an excruciating day, God brought an unexpected check from a continual supporting donor for $5,000 to push forward our mission. It was a reminder from Him, as I am looking at this mountain of circumstances in front of us, He reminds me He has the blessing already in His people, and through His sustaining power, He will part the waters.
You see, we don’t want to be a shining star for rare disease families. A great flash of light that burns bright and then dwindles away. We want to position ourselves in a way that ebbs and flows just like the sun.... consistent, ever changing, burning immensely so bright that ever time it peaks the horizon, the day is full of so much hope of what is to come.
The only way we can do this is to continue to exceed our goals. We will not move our stance on the research. Change will only come if we create the necessary systems, checks and balances required to produce real, powerful research that translates to clinic. But every time your giving exceeds our expectations, you allow us to plan the necessary growth we need internally to build the support infrastructure to withstand the amount of growth necessary. Our home looks exactly how you see here, consistent critical needs. When we have the ability to bring in a team member to carry pieces of the work load, it lifts the burden off our shoulders and harnesses a group together that can withstand the load. Loadbarries allow for faster, more consistent growth that can sustain the projects.
Too many times I hear, “I wish I had more to give”... What I fear many are really thinking is "I would have given, but what is my little support really going to do when the problem is so big?”.... Do you know that is exactly the ineffectiveness the devil wants you to feel. I can’t tell you how many of our projects have been funded to the last dollar with $1's and $5 donations. This shakes me to my core when I hear this spoken, because I believe God is calling His people to such magnitude for His glory. Brothers and sisters, stop robbing God’s kingdom work through lack of obedience.
Stop robbing God’s kingdom work through lack of obedience.
When the widow gave her last two coins, Jesus was moved by her obedience, not by the amount she gave, (Luke 21:1-4). We have to stop allowing the devil to make us ineffective by making us believe our support doesn’t matter. You are created to matter. You were saved by Father to matter. Your prayers, your support, your energy, your vision....it all matters. When you feel that pull in your chest to step forward, to be used by a cause, that is the Holy Spirit trying to guide you in the path that Father has laid to accomplish His ministry on earth. Stop belittling the calling because the devil wants you to see your perceived ineffectiveness.
If your donation is less than the fees it takes to process the card.....SO WHAT. God is after your obedience.....He knows your heart.
Give, serve, be the calling He is placing on your life. Through shear blind, obedience God can do amazing things through you and around you.
Please pray with us for Vivian to start to settle. Her body is going on 36 hours of hard seizures and we are getting to the window where if she doesn’t settle we will need to take her into the hospital.
Pray for how you can be obedient to His calling today. If you have felt called to support us today, that is amazing, our systems are linked below, we respect your privacy, and we would gladly rejoice in your support. But if you aren’t feeling called to us, and would like to get plugged into another local charity, please reach out to the email linked at the bottom as well, and we can direct you to the many amazing outlets in our community that we have walked with and would love to have you support them.
Please do not read this message, and simple do nothing.
Let doing nothing, not be an option this year.
Give, serve, be the calling.
God can only use you if you are willing to step out of the boat.
The water may be choppy, but it will be the ride of your life,
....if you will trust in Him.
I don’t want to meet Jesus having lived a life that was dry,
I want to meet Him, clothes drenched, maybe even treading water, but brave enough to have stepped out of the boat.
To God Be the Glory.
If you would like to find out about the amazing ministries to get plugged into right here in your community please reach out to info@DrakeRaydenFoundation.com
Images are copyright of the Drake Rayden Foundation and are not permitted for publication, excluding sharing of this blog, without written consent.