top of page
  • Tarah OSullivan

Getting Started

When God chose us to be Drake’s parents 10 months ago, we had no way of knowing what lied ahead…..All we knew was what little the doctor’s knew, how fatal and severe this disease was, and our convictions that for as long as God kept Drake’s heart beating we would be right there by his side. We knew that there would be many days of unknown challenges, and life altering decisions that would shape and challenge our family, and Drake’s life, on the road ahead of us…..honestly, a road that we felt so incredibly unprepared for. But we knew that God was enough and that His strength would sustain us if He had chosen this path for our family.

I have heard that “God doesn’t always call the equipped but He always equips the called”…this rings true on so many levels in my life. Since Drake’s birth, with God’s grace and wisdom, we have tried to wake up every day and answer His calling to be Drake’s parents, along with our other three beautiful children, with every ounce of strength and fight in us, and go to bed every night exhausted, but at peace that we had given all we had that day. The first three months we spent trying to turn our home into a hospital (in order to keep him comfortable at home) and prepare ourselves, his 2 year old brother and two sisters (4 and 6 at the time) for when God was going to call Drake home.

Our hearts were broken but we knew we had to trust Him……

When Drake turned four months old, I remember finally finding my feet and promising him that if God was going to allow him to stay here with us and fight ….then daddy and mommy were going to fight just as hard with him.. Since then we have tried our best to research any and all options to better Drake’s treatment and to escape this quick sand that always seems to be under him. God has sustained our family in so many ways and just when one treatment fails… He always reveals the next one in His time. Eric and I have been prayerfully thinking of starting a foundation in Drake’s honor so that we can raise awareness and the means needed to gain vital research and knowledge to give Drake, and children like him with NKH, treatments for a better future. We feel like God is telling us that time is now…..

We have started The Drake Rayden Foundation…please join us in fighting for Drake, fighting for better treatment, better devices, better knowledge of this disease…fight with us to end the relentless seizures and to allow these children to heal and THRIVE!

We have a mountain ahead of us and it is going to take a village… we have started speaking with researchers so we know what will be needed to begin laying the ground work. We are asking all of you to join us in prayer for our steps ahead….pray for God to continue to go before us and open doors and close the ones that are not of His will.

Also, please pray how God can use you.

We love you all and cant thank you enough for carrying our burdens with us.

Psalm 41:1-3 (NIV)

Blessed are those who have regard for the weak; the Lord delivers them in times of trouble. The Lord protects and preserves them— they are counted among the blessed in the land —

he does not give them over to the desire of their foes. The Lord sustains them on their sickbed and restores them from their bed of illness.


With social media being an ever changing platform, and some choosing to opt out of it all together, we would love to share our journey with you directly to your inbox.  Sign up below:

Thank you for following our journey!

bottom of page