- Tarah OSullivan
Another Step of Faith
Everyone is doing well. Drake has had some highs and lows these past few weeks. The lows are hard, as they remind us just how fragile his little body is…but the amazing thing is.. the highs are becoming so, so sweet. Drake is gaining more and more strength with his body. His head control is still the least of these areas…but his arms and legs are doing so very well and his fine motor skills are improving. He also is gaining a good bit of awareness. He smiles so much right now. His smiles bring so much joy, and they are so “appropriate” and help us to remember that he is very much in that little broken body fighting to get out. NKH is so cruel as it really causes so much chaos in the brain which degenerates any advancing…. a lot of children struggle to make eye contact, or “acknowledge” any changes in surrounding or people. I think that is the hardest part of the disease for me…. wondering if one day Drake will no longer know us here on this side of heaven. So….we continue to pray and push forward…
We will ask for prayer on a personal note… we have some decisions coming that we really need God to clearly lay out in front of us. With all the medicines, seizures, therapies that fill our days, the work with the foundation, not to mention the daily tasks of our other three children… the thought of adding to o
ur situation almost sounds disastrous…. but we also know that when God calls you to something… you can’t run from it but embrace it….and trust that He will lead and find the balance if it is His will. Please pray for clarity… pray for balance if we do proceed… pray that we never take for granted the calm, “normal” days, as our daily routine has changed so much since Drake was born. We have had some amazing people in our community step up and host events, and fundraisers and it has allowed us to “just be” for a bit..that has given us much rest and encouragement.
News with the Foundation: We just finished talking with the director about our commitment with Notre Dame. The Drake Rayden Foundation will solely be responsible for funding a $52,000 mouse model expenditure. This project will bring in two (with a possibility to resurrect a third mouse model) that will give Notre Dame multiple NKH mouse models. Having the proper mice, with varying degrees of severity, really pushes the possibilities for better treatment… as every treatment has to start in small animal models, and if the mouse models do not replicate the disease effectively, then the higher forces will not allow the treatment to move into the next stages. Also, this project is getting NKH mouse breeders to Dr. Pahan in Chicago directly to study the cinnamon effects on NKH. Dr. Pahan is the amazing research that focuses on degenerative diseases, and neuroscience…something NKH research has really lacked, a researcher to target specifically the effects of the disease on the brain… and with these mouse models actually in his clinic, he and his team will be able to study the brain and the changes that happen. Also, Dr. Pahan has a decade worth of published studies with cinnamon and neurological benefits, and learning why the cinnamon is effectively working for Drake, and NKH, could give us more insight into the disease. It truly is AMAZING TO SEE GOD WORK. Had God not opened the door for us to find Dr. Pahan’s research, and actually connected the dots with cinnamon and SB, and our disease… we would have never had this avenue…. and it all started with a phone call between an exhausted, determined family and a neuroscience, biochemist willing to help… To God be the Glory because only He can write these stories.
We wanted to say thank you… we have had so many step up and want to join the 40/12 monthly donation… we just received four more individuals this past week. These monthly donations give us a plan, they allow us to budget, and allows us to make these commitments to these institutes. WE WOULD NOT BE ABLE TO DO THIS WITHOUT YOUR SUPPORT, and we thank God for bringing you into our journey. We appreciate one time donations (we APPRECIATE ALL DONATIONS), and the events are a MASSIVE HELP, but the monthly donations really help to give us guidance on what is to come, and how to prepare.
Thank you all from the bottom of our hearts… for us to be able to commit to funding a $52,000 project with a foundation that has only been in function, for not even a year yet, is truly a testimony to how BIG OUR GOD IS and how He is not finished with Drake yet. Please continue to pray, please continue to give… if you have not yet, and would like to sign up for the 40/12, or make a one time donation we need your help…there is so much hope riding on these funds….
You can find all the information needed on our website at DrakeRaydenFoundation.com We want to hit this goal…. and we know that God is going to do amazing things through your financial support. Thank you, thank you all truly.…
We love you,
Eric, Tarah, littles and Drake
Now faith is confidence in what we hope for and assurance about what we do not see.
Joshua 1: 9
“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”