Stepping Out of the Boat
The past two months have been truly refreshing. We stopped traveling to Charleston for a bit, we slowed down on all the outside therapies due to the holiday schedules, and we have not made major adjustments to Drake’s cinnamon due to trying to make sure we had consistent labs to reflect the effectiveness of the treatment. It honestly has been so nice just to be “normal” again and spend time as a family, and focus on just “being”. I think God knew we were burning our candles on both ends and one thing He has confirmed is the need for periods of rest to refill our cup. Our other three children have enjoyed the calmness and attention as well. They are all such great kids and what I thought in the beginning with Drake’s disease would shatter their little worlds, has really brought a sincere confidence and grounding to their little feet. It is truly hard to explain but it is definitely the work of the Lord to see the growth among the thorns over the last year.
Drake has been doing very well over the past month. We finished the hyperbaric treatments back in November and what we thought was going to take a month down in Florida, God arrange a way to bring us home and still get the treatment Drake needed. We actually are renting a hyperbaric chamber here in our home, and have spent the last 3 weeks testing and getting the oxygen connected properly. We joined the two girls rooms, so that the spare bedroom could now be used for the chamber. The kids now call this room “Drakey’s therapy room”, and I have tried to paint and make it feel inviting so that the more we transform our house into a hospital, the more “normal” it feels. We have effectively treated Eric and myself a few times, and we feel confident enough to start treatments with Drake in there with us soon. Out of all the treatments we have tried, the cinnamon and oxygen treatments have been the most beneficial for him.
We are happy to report that more of the NKH families are starting to try the cinnamon. We have tried to share as much as we can and even made a video of how we prepare the cinnamon and administer/how we have dosed Drake to try to help them see how it may work for them. We are no doctors so they all are taking the information to their doctors to discuss and we have informed our doctors of the interest and to be on the look out if other doctors contact them for guidance. I think our doctors are a bit nervous but also excited to see the interest and possible success that lies ahead of these families. It feels really good to know that these children might have another option to help control the glycine, and a much healthier one at
that. The artificial sodium benzoate is just so brutal as it is just a lab component that is used as a caustic preservative. We continue to pray that this cinnamon will be wildly successful and really start changing treatment options for generations to come. The researcher in the UK has even completed the first trial on the NKH mouse models using a cinnamon sample. They are assessing the results to see how the cinnamon compares to the artificial sodium benzoate. Please pray over these readings as they will give actual “tried and true” research to publish for doctors to follow across the world. Talk about a God thing right there….
Another thing that we have been working on and I can’t discuss too many details right now, but hope to unveil it all very soon, is the negotiations between two fantastic researchers to partner and work on gene therapy for Drake’s disease. Now that we have the foundation it gives us more legal grounds to funnel money to the facilities and contract out the research. We first spoke to a researcher in the states back in April of last year. We were in the hospital the time of the phone interview with Drake and he was having such a hard run with the ketogenic diet. When we made the appointment with the researcher when we thought we would be well out of the hospital, but Drake was struggling so we had to stay longer. We did not want to waste the doctor’s time so we agreed to put a sign up on Drake’ s hospital door to not be disturbed for that one hour. I remember we spoke to this smart, kind doctor that had facilitated these studies on other diseases and had even seen them into human trails with success. We talked of vectors, and loading viruses to implant the targeted genes…… I remember sitting on that hospital bed beside our very sick child that had just experienced more seizures in 10 days than he had seen in his entire life and we were so broken…. we thought there had to be another way….gene therapy and all science sounded so scary and just… out of this world…. but then I remember crying after we ended the phone call after learning there is one virus known to man that does not cause harm to the body…… this particular virus scientist still do not know why it exists but that they have been able to use it to carry the genes into the cell to fix the broken DNA…. actually some people have the virus already in their bodies and would never know it was there…… I cried because I knew why we had this virus…..God in his sovereign, all knowing power, knew that one day research would be here and He created a vehicle back when He put the stars in the sky……
We have spent the first year of Drake’s life traveling to multiple doctors all over the Southeast, we have spent hours upon hours researching, we have spoken to doctors in more countries than I can count. We keep Drake on a very regulated diet and vitamin regiment, monitoring his blood plasma levels and monitoring his urine output for acidity daily. We do hyperbaric oxygen treatments, amino acid therapy, low laser light therapy, PT, OT, Speech, and Nero-feedback to try to train his brain to fight back when the seizures hit. Although God has aligned all these steps and we have seen some encouraging benefits for Drake, He also has affirmed that with Drake’s severity, we know we have to do more aggressive therapies if we are going to help him further. We actually have spent months reaching out to hospitals across the country trying to discuss the possibility of a liver transplant to possible replace one of the organs where the glycine cleavage system is present, and for Drake broken, in hopes that it would give him more percentages of the system working in his body to lessen his severity. There is new research published to show that this method is effective for diseases similar to Drake’s and normally the donors are the parents which Eric and I were more than willing to do that for him. We would lay our lives down tomorrow if we thought it would end this for him… as we would do for any of our children..…Drake would have been the first of his disease to have this done, and without the supporting research…. there is little hope for this path. Which again… we feel God keeps leading us back to gene therapy.
So about two weeks ago I wrote the email to commit to this journey and the kids, Eric, and I surrounded the keyboard and we prayed that God would oversee this journey.. because without His hand moving we would never be able to accomplish a goal as large as this one. We prayed over the email and over Drake….and I hit the send button. That has started multiple conversations between the two research groups and we are happy to say we are facilitating a phone conversation next week to finalize the game plan moving forward. Some days it seems serial that this all is happening, and why God chose our family I still do not know. But we are trying to be as obedient as possible, and we are calling this our “stepping out of the boat year”; referencing Peter as God offered his hand to him and told him to trust him enough to step out of the boat and onto the water. Mathew 14:27-31
The funds we have to raise this year to make this research happen is well into the $100,000s and my tiny mind can’t fathom this kind of money…. but my God is bigger and He will not bring us to it without a way through it. We ask that you all please pray with us over this journey. Please pray how God can use you and how, if you are able, you can partner with us to hit these numbers. We are planning multiple fundraising events this year and also trying to get some support on corporates levels. We have people in place to start petitioning grants when the time comes and we are going to launch a monthly gifting program (40/12 Campaign) in a few weeks that can offer families a way to support the research without putting a huge financial burden on their family. We did the math while discussing this particular monthly gifting fundraiser and if 200 families would commit to giving just 40 dollars a month…. for one year…… we would have the money we needed to pay our researchers in full….. please consider if this is you or your family. We understand this is a commitment to gift monthly, but sacrificing for one year for your family could add 50 years to Drake’s life, and other children like him……
We love you all so very much and we will keep you updated as we go…. our time of resting has come to a close and we feel God is telling us it is time to go to work. Please pray how you can join us….. you can make a difference.
Eric, Tarah, littles, and baby Drake
1 Chronicles 28:20
“Be strong and courageous and do the work. Do not be afraid or discouraged, for the LORD GOD, my God, is with you. He will not fail you nor forsake you until all the work for the service of the temple of the Lord is finished.”
“Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.
“Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.”