God's Full Circle
We met a precious family with NKH this past weekend. They drove to our home on their way home from a family vacation headed back to Kentucky.
I had been speaking with the mom for over a year about diet options and the way we use the cinnamon to help Drake and Vivian. She had been wanting to find alternative options for her daughter to help bring more natural nutrition, so that she could remove some of the more caustic medicine our disease uses.
This precious family was such a reminder of God's full circle moments.
It reminded me of our beginning. Traveling all over, trying to find a glimpse of hope in such a devestating disease. Leaving doctor's office, after doctor's office, feeling the heavy weight of defeat due to the limited treatment options.
The devastating reality of the life limiting conversations that was our children's future .... if they got a future at all on this side of heaven.
I always went to every appointment so eager to uncover the next bread crumb... unearth the next great discovery on the path to healing. And every time the crushing feeling at the check out desk, booking our follow up appointment.... leaving with the same information as our initial diagnosis appointment, and even worse now because we had tried all the "medicines" and none were working.
It wasn't the medical establishments fault...there was nothing to follow other than outdated information and a lethal daily disease that progressed at a rapid rate.
BUT GOD....
As we sat and spoke to this family, I found myself pulling out waves, upon waves of options that we had found successful, for a battery of things, from constipation to disease specific needs. A cabinet full of years of failure and provision all producing fruit that leads to hope.
It was such a fufilling time to be able to layer them with tools and options that we never had. Equipping them with insight that we learned the hard way. It gave purpose to the hard days, to the trial and error, and the Lord lighting lamps to guide our feet forward.
To see their spirits lift and their cups fill as they found rest here. As their precious baby girl rested beside my babies. It was pretty surreal.
A time I will hold dear.
Our time in this disease has been hard. Not just the physical and mental exhaustion from trying to care for two, terminally ill children. Not even the physical load of carrying a foundation and funding treatment based research projects for 9 years now.
Some times when you are bringing change to anything...especially a place where darkness has reigned, you face spiritual battles of all kinds.
Change excites some people, and it terrifies others.
And change always comes with struggle.
Some families with NKH have welcomed our efforts, they are quietly rejoicing with us on this treatment and have found a new sense of hope for their baby's future.
Some families are quite the opposite. They feel we are offering too much hope..."over promising what this treatment can do".
Honestly, we can't get too caught up in any of it.
God has specifically tasked our family to move this project forward. For 7 years, this project has been under our care and He has moved Heaven and Earth to keep it going.
I have watched him start this project with our first $70,000.00 raised in just 10 days
I have seen him align some of the industries experts, across the country, to lay the ground work for the project.
I have watched Father sustain the funding needs of one of the largest endeavors we had ever stepped off in during seasons of multiple, global crisis that no one knew where coming.
I have watched Him grant miraculous results that left even the best of our team scratching their head by the success.
He has sustained my children's lives from a vicious disease that has tried more than once to claim their light.
I have watched God start a heart back in my son's corpse like body after going without a heartbeat for almost 40 minutes.
And Father has ordained a treatment that not only has the opportunity to bring healing but offer a cure for a disease that has not had any real medical advancements in the last 30 years.
And, right now....right now, the very day that you are reading this as I type it....we all are getting to watch God work a miracle. A real life miracle that we have begged Him to allow for a decade.
Drake and Vivian will be the first two children to receive this gene therapy later this year. We have made a mighty effort in the funding we have raised, and the teams....TEAMS of people currently working around the clock to get this trial ready for November 2026 is a miracle in its self.
Please hear me ....
I believe God will bring such mighty healing that when people see Drake and Vivian's progress after the gene therapy trial, they are in disbelief that they were ever as sick as they were. That only pictures will suffice to prove that their bodies were truly that sickly.
I have had this hope placed in my heart by Father since they were little. No amount of human want could have sustained that vision and hope in the dark, hopeless days we have faced, without it being a gift from our Lord.
Not because Drake and Vivian are special, not because Eric and I are special ....quite the opposite.... we are as average as they come... just trying to be obedient to a mighty God.
I believe this because this drug bears His name....
"EmetAbba" meaning Faithful Father.
And my God.... the creator of the universe.... needs nothing from my understanding or my hands other than blind obedience and trust that HE knows the outcome.
HE knows the plans He has for this disease.
HE knows the hope and the future to come for these children....
Because HE wrote the beginning, the middle, and the ending.
We are hosting a final gathering happening on September 22nd. "Looking Up and Counting Down". We are working out all the final website details and sign ups will be live this week.
Same place as last year, downtown Spartanburg at the event center directly behind Rigsby's. It is free to come, we just ask for a head count so we know how many deserts are needed.
Come join us.
Yes we have some final funding that is needed, a project of this magnitude takes physical dollars, and if you have capacity...please give ...we need you to help us finish the last mile together.
But more than anything, come be apart of the miracle God is working. Come lay hands on Drake and Vivian and pray with us for the miraculous healing that is coming later this year.
Pray for their teams of doctors, the manufactures, the final dollars needed, the physical safety over their little bodies as we all step forward into this treatment.
Pray for the ripple of hope this therapy brings for every child, parent, and caregiver living with NKH now and to come. Pray for just how significant this treatment can be for a disease like ours.
And I believe...not becuase I am trusting my own ability or even the ability of our research teams, the results, or the manufactures/doctors....
I believe this treatment is going to rewrite the future for NonKetotic Hyperglycinemia.....because we trust the ONE who holds the pen.
"EmetAbba".....Faithful Father...forever.
Amen.
John 9:1-3 (NIV)
1 "As he (Jesus) went along, he saw a man blind from birth. His disciples asked him, 2 "Rabbi, who sinned, this man or his parents, that he was born blind?", 3 "Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."
He Is Enough