- Tarah OSullivan
Right now we are trying to get base labs for Drake so that we can hopefully start our trial…end of next week. Drake is doing well, he has had some harder days these past three weeks. We have been removing most of all his supplements and getting him on the bare minimum so we can have as little interactions as possible when we start.
We have resolved the issue of his blood being acidic. When he came home from the hospital from the failed ketogenic diet he caught a small cold and his chest was extremely congested. We started him on high doses of Vitamin C to help combat the congestion and we were all very glad that it cleared itself within a few days of treatment. We had decided to keep Drake on Vitamin C daily as a good supplement and also a good preventative since getting sick is always a concern. He was handling it well for about two weeks and then we noticed a big uptick in his seizures. He was not acting hisself at all and that is when we started digging and discovered the acid level in his body was high again. With some research we learned that artificial Vitamin C (ascorbic acid) mixed with sodium benzoate (Drake’s medicine he has to take) produces a chemical in the body called Benzene and it is extremely carcinogenic. Once we stopped the Vitamin C his blood acidity leveled out (the very next day when we tested) and his seizures slowed.
With Drake’s disease this is the constant battle we face, everything is so unknown, we are constantly reacting to symptoms because there is just not enough research. Last week we spent countless hours talking with our Neurologist and Geneticist about how to facilitate this trial. What labs to take…. how often to measure blood levels……coordinating how to get blood to the different labs….. trying to figure out an effective dose….. when to administer the dose…. also how to wean the other medicine down….. what possible interactions could we face….. what possible toxicity could come up in his body.… We also are speaking with the Doctor out of Chicago who's research we are hinging on to help guide us about what we need to be prepared for. I reached out to all three leading NKH research facilities across the globe: Dr. Greene in the U.K., Barb at Notre Dame, and Dr. Curtis (Dr. Van Hove’s assistant) in Colorado to see if there was any existing evidence that we could learn from. There is not…..so Drake will be the first human trial.
This is very exciting news because God continues to provide direction and clarity that this is our next step. There are some small anxieties about being the first to try something, but being that this is completely natural we know the “risk verses reward” is very safe. God has placed heavily on our hearts to search for a “natural, God given cure”, and we know that God placed this information and this Doctor’s research in our hands for a reason. We really didn’t “search” for this information…God truly placed this in our laps. We were driving home from Greenwood from our appointment with the genetic doctor and did a quick google search to get some information on a food we were interested in starting with Drake….and the information for this Doctor’s work was just there….. I asked Eric to get the Doctor’s number off the medical university’s website. I called the doctor, who’s name I am sure I butchered… and left a rambling message begging him for five minutes of his time…..within in 20 minutes…..20 minutes…..this doctor, a director of an entire division of doctors, in a very prestigious medical university….rang my cell phone returning our phone call. I tried my best to explain our situation with Drake and how we feel his research would be extremely beneficial to Drake and so many more children…….He said in his very strong accent, “Sure, I would love to help….send me an email and attach your doctors and we can all discuss details on how to move forward with your son.” With a disease as scary as Drake’s…THIS NEVER HAPPENS… most doctors are EXTREMELY careful about discussing ANYTHING. Drake is referred to as “medically fragile” and that means “proceed with caution" to most doctors. We drove the rest of the hour car ride just crying and thanking God that He even allowed us to see this research, and the doctor even called us back……and he is willing to help us!!!! It is truly amazing to watch God work…..and to watch Him, again, go and lay this very meticulously placed path in front of us. To God be the GLORY!!
We are making a strong effort to document this trial with Drake because if it helps, even the slightest bit for him, we want to make sure there is documentation for other families. We have learned that with so little research, it takes constantly studying this disease to get your hands on the latest trials and small advances. Most of which aren’t published. For me…this has been extremely overwhelming. There were countless nights in the beginning that I felt I had to stay up for hours on end to research all that I could. I must study harder, I must know more…. I must know everything, because our child’s life depended on it. I struggled with feeling helpless and defeated because no matter how much I knew it was never enough……and always in those times of brokenness and defeat God would gentle reminded me…..my precious child you will never be enough…..you are not supposed to be….but He….my Father is always enough.
So at every new step with Drake we are learning how to lay him down. Lay him at the feet of the one true King that loves him and loves us. God is teaching us if we trust Him…..if we really trust Him with Drake…..He will do far more abundantly than we ever could imagine or hope for. This journey has brought so much comfort from the Lord and how He will use this disease for good. He has brought such a beautiful dependance of Him to our family….one that we would have never experienced if He didn’t choose Drake for us.
Please pray specifically for the days to come…pray that the details of the trial will be exactly as God has ordained them…pray for Drake to be protected from any adverse reactions…pray for wisdom and attentiveness from us and his doctors….pray that we all will have endurance to with stand any pressure the devil will try to rally upon us….pray that the results knock our socks off….we are awaiting great things…..and singing God’s praises as we wait. We love you Father…. thank you all for praying with us..we will keep you posted as we walk this journey…We love you.
1 Chronicles NIV 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 leave you or forsake you, until all the work for the service of the house of the Lord is finished.”