01/04/2026
Update January 6th, 2025
We had just gotten all the kids fed and unloaded from church. We normally have to leave the house at 8 AM to be there on time to serve and then go to service ourselves. It is a commitment to get all of us up and out the door so early, especially with Drake and Vivian’s medical needs. It adds another level of preparing, but we count it an honor to help serve the Lord and our church family weekly.
Drake had woken up really tired. He and Vivian do best when they can sleep closer to 9-9:30ish before they have to get up. With all the disfunction happening in their medically fragile bodies, they have very little energy for a long day.
Drake had slept most of the morning, and woke up right about the last hour. His seizures have been higher the last few days, which can make him extra tired. He had picked up a little when we got home, and was trying to muster one of his sweet smiles as the kids were loving on him.
Rayph came up to me a few minutes later and had a troubled look on his face. He said, “Mom, now that Drake is a little older I think he knows he doesn’t want to stay in that chair anymore.” I immediately felt the pins and needles as the pain hit from his words. “Go on buddy,” I said. Rayph continued as you could see him trying to process as he spoke, “He wants to get up with us and play with us but he just can’t. When he was little, he was so sick, he didn’t really “know” what was going on. Now that he is a little bit older, and a little more aware…I think he doesn’t want to stay there…he wants to get up and that makes him sad that he can’t.”
I would be lying if I said I didn’t see it in Drake’s eyes too. I often fight back staying in these spaces long because it is painful to not be able to ”fix it” for your child. I can only imagine how painful it must be to sit in the same positions, day in and day out, not being able to move your legs or reposition yourself when you became uncomfortable.
We do everything in our power to reposition them consistently, and try new positions…but Drake’s extreme scoliosis makes his positions very limited to keep blood flow to his legs and also support his breathing capacity.
With Drake’s severe disease, severe scoliosis, severe everything the medical community is always kind…but there is nothing they can do to help us. The discussions go round and round…but they always come back to we have to stop the disease. Then we could talk about how to help them.
Holding onto hope that felt so far out of reach has truly been a gift from Father…I don’t know how else a person could see all the odds stacking against us and not give up hope without it being God’s provision.
Today God reminded me that “hopelessness” doesn’t exist with Him. Hope is never lost if we hope in His provisions for our children, and not one tear or prayer has been lost on Drake, Vivian, and our family’s future.
August is coming…Hope is coming. Gene Therapy for Drake and Vivian is coming.
August is the estimated gene therapy implant date and we are about half way with our fundraising effort. We need you to help us finish getting there. So many are praying, please don’t stop.
Many have asked why it is so expensive…because there is simply no drug developed yet…we are having to pay to have the drug manufactured, safety tested, and FDA approved….X2 because we are doing both Drake and Vivian in a sibling study.
Keep praying with us, God is faithful and mighty to move when consistently petitioned by His people. He is not a genie, but He does hear our prayers and moves mightily in His provisions.
And please give….give again and again… Give NOW. I hate to ask people for money, and wouldn’t if it wasn’t so important. And forgive me now because I am going to ask you every day until August because we simply have to.
There are no philanthropic arms funding this…no grants….just our family. Every Dollar Has To Come…or we can’t move forward. And how do you put a price on your children’s lives?
Every time God brings us to your mind say a prayer over us and then donate $5, $10, or $15. Imagine if that was just a few thousand people that gave and prayed this way. We would have it paid off in no time.
Big donations are tough to swing for families, we completely understand this. But small…consistent donations…
That is how the war is won.
If you have a company…it is a new fiscal year… please consider us for your donations this year. We are a 501(c)3 and imagine your employees getting to be apart of a real life medical miracle for two children in their own community, that they can physically meet and be apart of. We can come visit just call us, we would love to.
Whatever it takes to get us to the finish line…we are going for it.
Today when the pain of watching my sons- both wrestling with pain and challenges bigger than anything my Mama heart can fix on my own. Father reminded me that nothing is impossible with Him. Nothing. None of this suffering has been wasted…everything has brought us to this opportunity….And hope in Him is such a healer.
Hope is coming….D and V’s Gene Therapy trial is coming….
But it won’t come without YOUR help.
Please join us…help us change generations to come.
To God be the Glory,
Always
-Tarah O'Sullivan
Mother, Founder of the Drake Rayden Foundation
If you have any questions, please do not hesitate to reach out to us at [email protected]. Checks can be mailed to Drake Rayden Foundation 2607 Woodruff Road, Suite E 352 Simpsonville, SC 29681. Donation receipts for 2025 will be sent by January 30th, 2026 to reflect 2025 giving statements.
Info Link: DrakeRaydenFoundation.com
PayPal Link: https://www.paypal.com/donate/?hosted_button_id=GT857Y2Y6WFB6
Venmo Link: https://venmo.com/u/DrakeRaydenFoundation
For more information or to watch the He Is Enough film follow to DrakeRaydenFoundation.com
