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  • Tarah OSullivan

Future Plans

We wanted to update on Drake’s progress and the foundation’s direction. First, let me say… thank you…..thank you for all your prayers, your cards, photos of you wearing our t-shirts, setting up times for us to come share about NKH at your schools/offices, hosting fundraisers for the foundation, sweet messages of encouragement through our website, and your donations… We can not thank you enough for believing in us….You guys believing that we can make a difference in this terrible disease not just with your words, but with your actions. That has given us so much encouragement and allowed us to keep following the Lord, and pressing on. Trying to balance Drake, our other three children, daily tasks, and all the requirements of the foundation have been challenging…but God does not let a day pass, that He uses one of you to offer encouragement to our family…

Thank you…truly….from the bottom of our hearts for walking Drake’s journey with us.

Drake is doing really well right now. His sodium benzoate is at an all time low, and his cinnamon dose is in a good range, so we are seeing some really neat improvements. His physical strength is improving as well, which is nice to allow us to push his therapies to their full potential. Due to a good balancing act right now, with his medicines and supplements, his seizures are calmer, Praise Jesus! Great news, Drake is able to start working on solids again!! We had lost that skill, a few months back, due to his seizure getting out of control, and we have just now seen enough mouth control to be able to reintroduce. To God be the Glory, because this was a skill he was NEVER supposed to be able to do…much less loose and gain back multiple times.

The foundation has really gained some speed. We have multiple events planned for the future, along with a really exciting idea for the end of the year that we are still working on details, so stay tuned! Our

is at about A FOURTH of the way full, THANK YOU all for helping with this!!! These funds are really allowing us to start planning for future goals, and deciphering the best way to support the research. The research!! We have some AMAZING NEWS!! When God brought the cinnamon into our path, we knew it had the potential to work, but honestly we were scared… Drake would be the first child with NKH to EVER try it… and being so medically fragile, and having to take away the ONLY chemical currently keeping his glycine levels from throwing his brain into a coma…just so we could TRY the cinnamon… WE WERE TERRIFIED. We spent many weeks praying over this and it always resulted back to God telling us to trust Him…Again, there was NO medical research to support what we were thinking…. so we HAD TO TRUST HIM…. We started trying cinnamon back in the early summer of last year, and we all endured some really hard months trying to figure things out. Dosing, exchange rates, chemical interactions, effectiveness, schedules…. really just all the elements of how it all could work with our disease where unknown. We have months of journals where we recorded every adjustment, every seizure, every lab… just so we could talk with Drake’s neurologist (that went out on a limb with us), and email correspondence with the researcher in Chicago (with knowledge on the cinnamon)….inching forward to a goal we all hoped, and prayed, would work…..There were some months that we would take one step forward and five steps back… we struggled for a while….Drake regressed… and then… slowly we started to see improvement…. slowly we started to make gains….

Due to the limited NKH research funds currently available, we knew we had to really show some hard evidence that is was working in order for the researchers to consider it for a “treatment” idea, and to use funding to explore it…. Due to Drake’s success, and the biochemistry behind it…..there are currently THREE RESEARCH FACILITIES LOOKING INTO CINNAMON, AND ITS DERIVATIVES, AS A POSSIBLE TREATMENT FOR NKH!! You guys!! This is amazing! THIS IS A GOD THING!!! This disease has not had ANY ADVANCEMENTS IN 30 YEARS, in patient treatment options… and now we could possibly have something in the near future, in written research that these other NKH children could use, with their doctors, to try the cinnamon!! A treatment that can allow these children to start the journey of healing…

One of NKH’s longest studying researchers and us were discussing cinnamon up at the conference in Boston. Most are skeptical when we start discussing cinnamon, because again…it is cinnamon… and this disease is simply awful….We kept telling him to please consider it because we had seen so much improvement with Drake, and Eric and I didn’t understand fully why it is working…but that it has been working…and that has to mean something…

He wrote me an email last week that I have attached some of it below:


“I have been thinking about the cinnamaldehyde and related biochemistry. I think we can use a derivative of this as a potential replacement for benzoate that would alleviate some of the concerns. I have asked my chemist what it would cost to make this. I also reached out to a company if they would be interested if we developed this… I would want to see first if my idea is actually realistic…but this is encouraging.

Thank you for making me think! Although I may be skeptical, I always appreciate alternative ideas and try to see how I can make it work. In this case, I think I can work with it. “

(out of respect to the unpublished research, we have not included his name)

​We could not have done any of this without the Lord leading, and your amazing support. Your donations allow us to do these things…. push for better treatment, travel to speak to the researchers in person, support them financially to help carry the funding burden.

News Channel 7 covered Drake’s story back in February… the news coverage aired and they named it “Drake’s Destiney”….I didn’t think anything of it at the time…. but destiny was mentioned in our sermon at church this morning… our paster said that God designs a person’s destiny… the devil has no say in this matter…. God will decided Drake’s destiny…not this disease…… and we are so thankful He is allowing us to be apart of it….

We love you all,

Eric, Tarah, littles, and baby Drake

Jeremiah 29:11

“For I know the plans I have for you, declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future”.

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