April/May Update

Things have been so busy. I hear so many families say this, and although our April/May might look different than most, I completely feel this deep in my bones!

April and May have been meetings every week, project updates bi-weekly, fundraising board meetings, and trying to keep D and V healthy. It is a lot, in the best possible way.

Our steps are tedious right now and I have to keep reminding myself they are leading us to the final step. A step that could possible change the trajectory of our children's life forever. Change this disease for generations to come.

The manufacturing of the drug is in full swing. I had someone ask the other day about the project and they were shocked to hear it was already in progress.

That is just it, all the fundraising we are doing, all the money raised in August last year at the dinner, that is going out weekly to the manufactures. We aren't fundraising for a project or production to come. We are fundraising while paying for the project that is happening right now!

It is the most exciting and surreal season I think we have lived through. Drake and Vivian, and all these children, can't wait for there to be enough. Stock piled funding, cushy schedules, enough time to get all the pieces neatly packaged to step forward.

They need help and radical steps of faith yesterday so their tomorrow is forever changed.

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It is hard to truly understand the magnitude of this season in our life.

We are trying to balance all the weight of the project while raising five children, working, homeschooling, coaching, and running the foundation.

Thank you.

Thank you to our precious donors and supporters who have been so incredible patient. We are a small foundation and every extra dollar we have right now is going to this project. I would love nothing more than to sit and talk with you all about all the God moments in this project, and how His hands have been all over it.

I am always so humbled when I see a message come through telling us that you are praying for our family and can't wait to hear an update. There is never an ounce of frustration about the limited updates, but shear love and excitement for what is to come for Drake and Vivian.

Thank you from the bottom of this tired momma's heart for how you have loved and held up our family through out this journey. I truly do not know how to thank you.

The update is so good. God is so good. The manufacturing is almost through it's first half and it is schedule to hit the second facility mid June. The product will be at this second facility until it is filled into the vial that will be delivered to our children's bedside to be given during the trial.

Again, it is hard to put into words. But we are so incredible thankful for what God is doing.

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We are writing weekly checks to the facilities and always praying over the numbers. We are currently a little over half of the funds needed and our funds start to run out towards the end of manufacturing.

We talk of fundraising often with our board and try to plan the right time to launch the next fundraiser while also balancing the delicate needs of the project. Every day has a set amount of hours and you can only carry so much at each step.

We normally always do a golf tournament each year and with the weather warming up, it was a topic we kept batting around on our board meetings for fundraising opportunity.

We talked and prayed over it a good bit, but with all the needs of the project, we couldn't make it make sense without having to put down something with the project and we simply can not do that at this stage in production.

I felt the weight of looking at the project budget in one hand and how our funds in the other hand run out before the bills do. I could feel the weight well up in my heart for weeks now wrestling with it all.

Trusting the Lord will provide, while also fighting my type A personality and wanting it to all neatly be sitting in our bank account already so I didn't have to keep thinking about it.

"Lord, you said step forward in faith and you would bring the rest of the funding. Father, I know you are faithful, and I do not mean to doubt your timing...but my Mama heart feels fear when I look at these numbers and the timeline. Help my faith be bigger than my fear, Father. Remind me of your control over it all."

I received an email a few weeks back from one of the companies we are working with for the manufacturing of the gene therapy. I meet with them biweekly but this was a different department that reached out.

This was the communications director and she wanted to let us know that they host a golf tournament, yearly, in Ohio where the facility is. They have only hosted for a few years now, but this year they wanted to partner with us so that the proceeds would come to our foundation to support our efforts.

The golf tournament happens in August and they hope to raise close to $50,000 to help push towards our efforts.

Isn't that just like the Lord. He provided the very thing I have been stressing over not doing, and provided it better than we could have asked for in this season.

The Lord orchestrated a golf tournament that raises more money than we have in the past, and we do not have to carry the load of hosting it, but receive the benefit from the proceeds.

I cried the whole time on the zoom with the lady. I felt so bad, I am normally in control of my emotions, especially on meetings with these large corporations.

But I think the weight of my worry, and the goodness of our heavenly Father was so rich, I just cried. I made the lady cry on the zoom also, so we were both crying by the time we got off the zoom.

God reminded me that He is such an intimate Father. He hears every whispered prayer and sees every tear shed behind closed doors while we stand in faith that He is going to move this mountain.

The trial is planned for the end of the year. The drug is in full manufacturing phase almost at the hand off stage to enter the final facility. All that is left for my babies to finally find healing is funding.

Please continue to pray with us. We truly believe God has already provided the funds and prepared the hearts of those He is calling to give to get us to the finish line.

Pray for Drake and Vivian. Since the dinner, we have had so much sickness in their little bodies. Drake more than Vivian. He is in a season of crying out in pain for hours, but we have no idea where it is coming from or how to help him. He only finds comfort when we hold him.

I can't imagine how it feels to be terrified to live in your own body. A body that fights so hard to keep you alive, but also causes so much pain and suffering.

Pray for my Mama heart. For years we have held onto blind faith...

Faith that we knew God would and could bring healing...but never being this close to actually reaching it.

It is a bit harder...

Now it is so much more real.

I can watch it weekly being manufactured, and view story after story of the effects gene therapy has on other children with similar genetic diseases...

I can see the difference it is making, and I am letting myself daydream of what it could do for Drake and Vivian. The places we will take them when they are healed...the life our family could live when disease no longer dictates our days.

Now that hope has roots, and leaves....you can start to smell the aroma and you can almost hold the fruit.

With that hope though, comes the crippling fear of failure.

And when that fear becomes all too smothering...

We sit in His word and we let Him remind us of truth.

We fight that fear forward with faith in Him.

Faith that God is who He says He is.

God already has the funding taken care of.

And if He began this journey almost a decade ago,

He will see it to the end.

My God does not need my fear, or over planning, or worry.

He needs my obedience.

My obeidence to walk in the steps that He has already

prepared for us to step into.

All for His glory and our good.

Pray with us for others to continue to walk in obedience to pray for our family, share our story so others hear of His glory, and give so that we have the tangible needs to finish this treatment, trial this drug at the end of the year, and blow this disease out of the water for Drake and Vivian and all the children to come.

He Is Enough