Today is Vivian Faye’s Third Birthday...a birthday we were told she would never see. A birthday a few days ago, we were not sure if we would be celebrating hooked up in the hospital to all the cords and watching her seize uncontrollably.
When you are a child, diagnosed at birth, with a terminal disease....birthdays are so much more precious when, and if, they come. Every year is a celebration of life fought for...and at the same daunting time, a reminder that time is running out. Little three year old bodies can only handle so much trauma.
Vivian was able to come home yesterday morning from the hospital. We were discharged at 3:30 am. We took her in on Tuesday because she had been seizing for almost a week, and despite our best efforts, we could not break the cycle.
For almost 6 years now, we have studied every reaction, every shift of her and brother’s body. We keep extensive journals of their food, medicines, supplements, lab work, bowel movement, clinical presentation. Anything and everything that may tell us their bodies’ story of what is happening internally as they can not verbally express.
NKH does not have treatment....yet. The only treatment that is available is a shy step from nothing, and most of the time the “treatments” cause more harm than good to their little systems. I spoke to a mother at a conference once that told me something I will never forget. She said as we spoke, “The treatments now are better than what the children used to be given, at least. They used to give the kids rat poison.” Her precious little one was no longer living as the child had passed when she was just a few years old. The horror I felt, and still feel, as I think of what these babies have suffered for generations, and will continue to suffer for generations...is hard to put into words.
That is why we continue to fund, and push forward research to gain ground on treatment advances in Drake and Vivian’s lifetime. Not having treatment options because your disease is "too small to matter” to the world....is simply not acceptable.
We can not fight to save these babies while in the womb of their mothers, and then simply turn our backs on them once they are born. When they live to suffer unimaginable lives and then eventually die, why does this not wreck us? The fight has to continue until every child has treatment, or this fight is in vain.
Vivian had to be admitted on Tuesday because her seizures were spinning out of control, and her heart rate was dipping in the 50’s. We still do not know why she had shifted as the levels that we normal monitor are in their normal range, her blood gas was normal, her CMP came back within range, magnesium was normal...EEG showed the same pattern of brain activity, of course now with the increased seizures. Everything we normally track to monitor her and brother came back in range, and no viral or bacterial pathogen is resulting.
We tried two loading doses of two heavy hitting seizure medicines that knocked her out for a few hours, but with time, she just seized through them. The seizure medicines on the market do not target the areas of the brain where our metabolic crisis happens, and that is why our children across the country can still seize through 2 and 3 seizure medicines taken on top of each other.
Eric and I were trading off at the hospital, and I remember looking down at our notes one day, as we were tracking seizure activity for our neurologist, and she was having seizures every five to 10 mins WITH the massive dose of seizure medicine in her little system. I stopped counting the numbers on my page and just sent a picture to him after I got up to 57 seizures in a 12 hour period. One medicine even shut her bladder down for 8 hours, and we were having to manual express urine, as she physically could not void urine on her own anymore from the side effects of the medicine.
You see...when children live in a place where there is no treatment options...on paper that sounds not so bad. “Well, there is nothing we can do....The problem is too big for me to think about....this is terrible but someone, someday will figure out something....it will work itself out...” But that is just it...that someday, somewhere doesn’t come unless you do something to help them. Children still have to wake up everyday, seizing, gagging and turning blue because their brain won’t chemically release their muscles to take a breath, even when the monitors are screaming that their oxygen is dropping while their heart rate sky rockets.
Vivian has seized for weeks like this and we have dug through every article, contacted all of our research partners for any insight in the studies that they are seeing, and analyzed every report we have to look at. The research is phenomenally advancing and God has opened so many tremendous windows through our foundation’s work...but we have to go faster.
This disease moves at such a rate.......we have to go faster.
I sat up all night Wednesday night with Vivian in my lap, holding her head so the saliva could run out of her mouth and not cause aspiration. One hand holding her as the other skimmed research article after research article. I tracked neurotransmitters and receptor locations of the different seizure medicines we were trying. Which receptors we know to be effected, which ones the drugs were targeting. The answers are here...right in front of us....we just need more trained eyes to help us look.
We are fixing to launch another round of projects with the Drake Rayden Foundation that is going to help make another bold move forward with our studies. The DRF Gene Therapy Project in 2019 was our last large funding project, and it is advancing very nicely and fully funded because of your support and God’s provisions. Because of the success of that project, this is allowing us to plan different approaches for research. Different targeted studies that bring in more facilities and expertise to help continue the good things happening. We have to go faster....we have to have the funding....treatment is possible, and it starts with you.
Today, Vivian turned three years old. We are not able to do a party and celebrate with our family and friends because her little body is simply too weak and we are trying to allow her to rest. Today she will be celebrated by her siblings and her Daddy and Mommy that love her tremedously. We are so thankful she was able to spend her birthday at home and that our family is back under one roof.
We will celebrate her sweet birthday with a party a few weeks from now, but today, if you are reading this, if you are following and praying over my children and this disease...please make a donation in Vivian’s honor.
Share this post, send it to someone that needs to know that there are children suffering as they wait for help. $5, $10 to you seems so small to make an impact, but can I remind you that two years ago DRF started a Three Million Dollar gene therapy project with $5 and $10 donations that is now fully funded.
Our ask is coming...we have been praying over projects and planning the next steps forward. We do not ask unless the support is vital, and we have targeted research with massive potential to push the funding into.
Today we celebrate God allowing Vivian to see another birthday. A donation in her honor to help her meet her goal is very much appreciated. And we ask that you start preparing your heart for joining our family once again to step out onto the water for potential projects God is calling our foundation to lead again.
It is time...
Happy 3rd Birthday our precious, darling Vivian Faye...your fight has rekindled a fire in your mother and reminded me why we keep fighting..
Because you, and brother, never stop fighting....
And we will never give up.
To God be the Glory.