Our sweet girl finally started to settle around Saturday evening. Thursday and Friday the seizures had slowed to not consistently coming but to only clustering. Vivian started seizing Monday night, with no warning, every five minutes. She continued until Wednesday when we took her into the ER to have labs run. After eight hours of testing and X-rays, nothing showing out of the ordinary, and no medicines they could offer, we brought her home to continue to try to get her body to settle.
Bringing her lifeless little body home from the hospital because our disease does not have treatments to offer is a hard that is difficult to put into words. I find myself, after the exhaustion and desperation subsides, feeling a burning in my soul to fight harder and to push faster. In every other sense of the word rare means valuable, unique, priceless. The more rare a diamond is the more expensive, the more sought after. People drive from all over to look at rare artifacts that have been unearthed. Why then...why when it should matter the most, when we are applying rare to a human, a child, do we treat them so disposable in society?
As I have sat with Father this week I keep hearing Him speak truth about how He views rare. Over and over again Jesus gave us the example of his heart for the one...the Shepard left the 99 to go after the one. We want to inspire these foundational roots throughout the foundation. Walking the way Jesus did, viewing His creation as intentional children of God that He has given us to unlock phenomenal medical breakthroughs. I believe that if we stopped looking at rare as an inconvenience to science, and in turn, saw how magnificently made these precious children are, we would unlock doors never seen before and unleash powerful knowledge. A child living with a rare disease, their body has turned on backend systems and unlocked information that we have never seen before. For my children to wake up everyday and function at base level is truly a miracle with all the disfunction happening.
What if we saw these beautiful children as the gorgeous creations they are sent by Father to lead our footsteps to help heal some of the most wide spread diseases?
If only we had eyes to see their value as Father does...God makes no mistakes, there are no accidents, everything works together for His glory and our good.... if we have eyes to see His hands at work.
Vivian had one of the best therapy sessions Monday that we have seen in months. Just last week she was suffering from hundreds of seizures that left her body pale and lifeless. This week she is so bright eyed and engaged that even the therapist wrote last night saying what a blessing the PT session was and how much hope she had for Vivian after watching her.
Drake and Vivian are so resilient. I can’t fathom the strength God has given them to withstand the suffering they do.
The hard truth is that what happened last week will continue to happen until we find better treatment. We changed nothing to cause the events, and we still don’t know why it happened. It is like living below sea level or living on a tornado line. Until we move out of the area, and find better treatment options, we are just sitting ducks waiting for the next storm.
We need your help. I know you love our children, I watch it every time I have the pleasure of meeting one of you and I see the pain in your eyes from going on this journey with us. Thank you for walking with us, and thank you for the sustaining prayers you have poured out to heaven for our family.
We need you to think about how you can partner with us on a consistent basis. Consistent funding allows us to think short term and long term goals together. Consistent funding allows us to have tools to bring on the research teams that are currently waiting to be funded by our foundation. We currently have three projects that we simply do not have funding for yet. Having a disease that effects only three children in the entire state of South Carolina, and I have two of them in my home, makes a massive mountain to climb.
Your funding allows us to push for change. Your funding allows us to establish the necessary partnerships to create sustainable growth, and open up treatments to families at a much faster rate.
Vivian was up and communicating and interacting with her siblings Monday. She was taking her bottle and inspiring her physical therapist with how hard she was working. Drake and Vivian are fighting each day to hold on as we fight for them. Just like hundreds of precious children across the country.
We need you to fight with Drake and Vivian. We need you to lock arms with us.
To God be the Glory,
- Amen
If you would like to partner with the Drake Rayden Foundation, a 501(c)3 not for profit, to help further the change mentioned in this post for NKH please consider a donation of any amount. No amount is too small. Please donate now.