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  • Tarah OSullivan

New Treatments

Drake OSullivan with NKH

Drake is doing well. We are still seeing good seizure control from the Amoxicillin (antibiotic) which is a complete God thing. A few weeks back, Drake was hospitalized due to catching two respiratory viruses that made his breathing really strained. He had to be admitted a second time out of fear the viral had turned into bacteria, and he was put on a pretty stiff antibiotic to control the infection. After two days of being on the antibiotic, he hadn’t had ONE seizure! For a little boy that has a minimum of 15 grand mals a day, this was nothing short of a miracle.

We did our research, and the antibiotic was in a class of “beta-lactams” that could in fact cause seizures in a normal brain. For Drake…it was the reverse. This understanding led us (with the help of our five research teams) to a theory. We are getting ready to trial another supplement that should have the same effect on his brain…but even better results. We are going to test an extract from a soy bean called Genistein. This iso-flavone is shown to cap the glycine receptor, and the NMDA receptor in a person’s brain. These are two of the major receptors that are effected by NKH. This supplement is still very misunderstood, used mainly in cancer research and some hormonal issues for women experiencing imbalance. We will have to watch for any side effects and of course try to figure out a therapeutic dose.

A few weeks back I was speaking with our geneticist on the phone about the supplement and we were discussing how we were going to monitor Drake moving forward. We are going to set up the treatment very similar to how we did the cinnamon with Drake. Eric and I will keep meticulous notes in our journals. We will do weekly/bi-weekly blood draws at home. I am even going to start spinning down the blood and extracting the plasma to freeze right after we draw to make sure we get the most accurate numbers. Sometimes when the blood has to sit it can start degrading itself as our body is so finely created it continues to work even when blood is separated. We will have to measure every aspect of Drake’s intake, as well as any negative or positive changes we see clinically. It is quite the production to try these new ideas, but it is always worth it in the end.

We choose to take such extensive steps when we bring in a new possible treatment on, because it is the only way we know how to track Drake’s progress. If we didn’t record everything, and Drake started to have trouble, we would not know how to go backwards or at what stage his body started to struggle. Also, if we DO find something beneficial we can go straight to the researchers and say at this mg/kg this supplement became therapeutic and this improvement is what we gained. This is a huge help for trying to get a treatment expedited for NKH children currently living. Mice, mutated cells, and zebra fish are what we study NKH on in a laboratory setting, and that is very beneficial for testing theories, and trying to understand what parts of the body are affected by the disease. But it is just that… animals. God made our bodies so meticulous and wonderfully made that there is always such a void of if the disease will react the same way in humans as it does in animal models.

Please pray for our next step. Every push forward always comes with a cost. Please pray Drake accepts the treatment well and that there are MAJOR improvements that lead us to further healing. Also, say a prayer of thanksgiving. As I spoke with our geneticists on the phone, I asked her as we were finishing our conversation…. “two short years ago when we met… did you ever think that a disease that had NO TREATMENT advancements in 30+ years…that you would be apart of trialing THREE NEW TREATMENT options?? That is nothing short of how BIG GOD IS!!!”. She laughed and said, “you are right… it has definitely been encouraging to watch.”

God is a healer… He sees all and knows all and He wants NONE of us to suffer. God WILL give us the answers if only we TRUST Him and wait for His lead. He loves us and wants all of us to live boldly, eagerly awaiting what He will do in our storms. How quickly I draw back and cower when life gets hard. God doesn’t need us to be strong…. HE IS GOD! He needs us to stand behind His shield and be ready to give Him the praise and honor when He moves our mountains.

All our love,

Eric, Tarah, littles and Drake

John 11:4

But when Jesus heard it he said, “This illness does not lead to death. It is for the glory of God, so that the Son of God may be glorified through it.”


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