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  • Tarah OSullivan

Disney and Deadlines

A little boy living with NKH. His first trip to Disney World.

We all just came off our first family vacation to Disney World. The grandparents surprised us with a family trip and it was a wonderful time to disconnect and just be “silly” and fun with our littles. We were a little unsure of how Drake would do with the heat, and trying to keep his medicines, tube feedings, and seizures under control was a bit tricky, but thankfully we all managed pretty well. And surprisingly, short of a few curious glances, or questions about “why the need for our red tag” (the tag they give the strollers if they are wheelchair accessible), I have to say we felt pretty “normal”. With a medically fragile child like Drake, you can plan all you want, but it truly is the Lord’s mercies that allow for good days.

We tried to plan most of our day around things that we all could do with Drake, and he seemed to really enjoy himself. We have to commend Disney for all their efforts to be sensitive to a special needs child and keep the family together as much as possible throughout the park. Drake is still small enough that we were able to carry him in our lap during the rides, which I think helped keep him calm. The only time Drake seemed “unexcited” was when he got sprinkled by a ride that we did not know had a little water feature inside. He had a quick fuss of protest right after, and then Daddy quickly settled him back as we repositioned him in the middle of the ride to make sure he was shielded from then on. It was quite cute to see his little quirky, angry face. He is gaining so much more personality as he grows, which is wonderful to see. We know the Lord sustained Drake and we truly appreciate all the prayers covering our trip.

Today was a very exciting day for the Drake Rayden Foundation as well. Today as we left for home, we also had to send our first contracted installment to the University of Notre Dame. I sat in a small bank office, and filled out all the forms to allow for the transfer to happen. God reminded me as I waited for my copies of the agreement to be printed of the many nights, Eric and I prayed over this decision. You all have been so extremely generous to our family, with your support to Drake’s foundation... but to be brutally honest… we were a little scared to make this large of a commitment. Eric and I remember praying over this commitment prior to signing the contract, and we felt like every time God kept whispering “do you trust Me?”… Up until this point we had been donating when it came in, but this was the first time we were vouching to come up with a set amount of money, on set dates, in a contractual agreement…and who were we to think that a family with four small children, one of which is extremely sick, and now a new foundation could make all this work? These were some big shoes we were stepping into, with a lot of uncertainty to stiffly any momentum… but instead of staying in the fear… we stepped past it, took a deep breath, and stepped out.

God remind us of where our faith should be… not in our own ability but in His…. you see, if we were going on our own strength, then we would always come up short… but instead.. we prayed and we trusted His direction.… The commitment we made is not just about the physical dollars we promised to pay, but so much more than that….The hope that could come from these funds. Notre Dame is working on some cutting edge NKH research, in a state of the art facility. These funds will also bring in a fourth researcher to now study NKH on a neurological level, which has been desperately needed for our disease. So as the devil wanted us to see all the reasons how we could fail….God reminded us of the one reason why we couldn’t….When God brings you to it…. He will ALWAYS provide a way.

We encourage you all to step out in faith for that one thing, or place/area you feel God has been calling you to… there are no do-overs… and for us…Drake, like so many other children suffering with NKH, are depending on people to stand up and fight for their future…. a future without pain, or seizures….

So, today we transferred the first of our three payments to fund research for NKH….$15,000 thanks to all OUR AMAZING DONORS that have stood with us, and continue to support our efforts at the Drake Rayden Foundation. And though it took almost every penny we had, we would rather our bank account stay empty and know that we gave everything we could to fight this disease, then keep a cushion and never truly give it all to trusting God’s provisions.

Please join us in praying over these funds and how God is going to use them to bring knowledge and treatments for Drake and so many children… Also, THANK YOU ALL so very much for walking this journey with us. We wouldn’t not be able to do any of this without your help. We love you all, and we are trusting that God will continue to provide.

We love you,

Eric, Tarah, littles and Drake

Mark 4:30-32

Again He said, “What shall we say the kingdom of God is like, or what parable shall we use to describe it? It is like a mustard seed, which is the smallest of all seeds on earth. Yet when planted, it grows and becomes the largest of all garden plants, with such big branches that the birds can perch in its shade.”


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