Update 12.17.20
My goodness what a busy few months it has been. Kids’ schooling, Drake and Vivian med changes, my school schedule, foundation work, research projects, new exciting upcoming project ( more to come on this one ). Life has been truly overwhelmingly well, and extremely busy.
Drake and Vivian are in a mediocre spot right now. They are having seizures, 3-5 a day, and their energy is rather low. We are trying to figure out the steps forward on their care. We attempted another ketogenic (out patient) diet at a very low ratio at the beginning of the month. We had been working with our doctors, and researching a lot of different methods to see what we could do to minimize the side effects, and prepare for the negatives the diet can bring. The more I learn about metabolic pathways in my schooling, and study the children’s clinical presentation, the more I feel God calling us to pursue the diet…again.
We tried the diet when Drake was about 6 months old, in patient, at our local hospital. It was supposed to be a 3-4 day stay to initiate the plan, but turned into an 11 day, ‘hail marry', to save him. For some reason, he took a really hard turn on the diet, and it became life threatening. So why try it again, you may ask? That is the same thing I keep asking myself. But, when the Lord keeps pushing us to something we have to be obedient. Regardless of how many times we stumble and fall.
I felt the same way over two years ago, when God kept calling us to the cinnamon treatment. There was no link between cinnamon and NKH, and no research to follow. We had to start from scratch and Drake was the first “clinical trial” which was tough. It took us 6 months of grueling failure, before we were able to make the cinnamon therapeutic. Now, researchers are studying the effects of cinnamon on NKH, all the way in the UK because of God’s lead. When God puts you on a path, He will bring you through it, you just have to have enough faith.
Faith… that word has been used a lot recently in my own mind. When God called me back to school, January of last year… I really thought He was kidding. I was a mom of 4 littles, one deathly sick, recently found out I was pregnant with our precious Vivian. I really thought it was a “test”, to see if I would follow Him “anywhere”. I submitted the applications really just to “prove” to myself, I would "go where He called” me. Even after getting accepted, and starting the journey, I really didn’t think I was supposed to be focusing on anything degree wise. I was there to gain as much knowledge as possible, as fast as possible. My children were dying. I signed up for classes, and audited at least a dozen more, plus working hands on in multiple labs, just trying to gain as much knowledge as humanly possible. It wasn’t about grades, or accolades, but ways to help push treatment forward.
The past six months, God has truly started to develop His call in my heart, and make my path clear. Being directly involved in the research, and educated in what areas of research we fund at DRF is a non negotiable, that He has made perfectly clear. If we are asking others to trust us with their donations, we are going to make sure their funding is put in the best categories to launch treatment forward for NKH. But, I have seen that being involved in the research is not enough. It is not enough to push forward the change we want to see in the medical field for children and families living with this disease. Research is amazing and advancing daily, but without both sides of the equation - it is hard to merge the two worlds.
So, this semester I spent a lot of time at Jesus’ feet, being quiet, and listening. He has afforded us a massive amount of support through grant opportunities and your continued sacrificial giving to keep our research projects moving forward. Through this time in prayer, I have felt more clarity and affirmation of my steps forward. If I can carry the workload ahead, in three semesters, I will complete my undergraduate degree in biochemistry and will be applying to medical school. The thought of more schooling, especially medical school…. Well, all I can say is…. If Jesus calls me to it… He will make a way. And I will not thwart His plan, by my lack of faith.
The thought of families having a clinician that they can call, from birth, that knows the disease intimately, not from a research background, but from the painstaking journey of a mother living with two children suffering that same disease. A clinician that is willing to help them follow every option, look into all the “why do we see this happen when” and help make sense of all the unpublished, yet extremely relevant research from our disease, and so many other diseases…..is my "why”.
Trying to balance all that God is placed in front of our family is tough. And I ask for continued prayers as we learn to navigate. Our updates have been fewer, and farther between, but we are working on partners to help us lighten that load, all while keeping everyone involved more intimately. Thank you for loving us and walking with us. Thank you for praying over our family, and praying for strength and guidance for Drake and Vivian, our research endeavors, and the continued success we are seeing.
To God be the glory and as always, thank you for loving our family.
T
“may He equip you with all you need for doing His will. May He produce in you through the power of Jesus Christ, every good thing that is pleasing to Him. All glory to Him forever and ever! Amen.”
NLT Hebrews 13:21