“For I know the thoughts and plans that I have for you, says the Lord, thought and plans for welfare and peace and not for evil, to give you hope in your final outcome.”- Jeremiah 29:11, emphasis mine
This is a surreal post. It has been months since we have had word on anything diagnosis-related. We have known that the NIH continues to study our family’s DNA; yet I wondered-truly wondered- if we would ever get close to having answers concerning our girls’ disease on this side of heaven.
Ally and Bailey Grace are 27 months old. Their smiles light up any room, their giggles so very contagious. They babble “mamama” and “bababa”; yet the only communication we receive is from staring into their deep, larger than life hazel eyes. They have moved mountains with their spirits, yet their only movement is the kick of their little legs. They are not sitting unassisted; yet they rest contentedly in whatever the day holds.
Simply put, they are angels on this earth.
Six months to a year go, my reasons for wanting a diagnosis were not the best. I just simply wanted to know. I felt entitled to it even. God has done a work in my heart that only He could do, and now, I can honestly say that if we end up without answers, I trust Him wholeheartedly.
We received a call last week from our team at the NIH. They re-ran our girls’ biggest genetic test, and found a mutation within their DNA that appears to be leading us to answers.
This is a large protein that has great affects on the brain, muscles, and nerves.
The NIH cannot find any human cases for this particular gene.
If this is the mutation God chose to give our girls, knowing would be extremely helpful moving forward.
Not only that, we could also help the future Ally and Bailey Grace’s in terms of prognosis and other medical expectations.
This is where you come in.
I have prayed about whether or not I would broadcast this information; and in the midst of this, I realized something: I truly trust that whatever God chooses to do with all this is HIS choice. I am okay with nothing coming from it even; yet in this circumstance, for reasons I cannot explain, I do feel called to step out and seek out in obedience.
I would ask that you would SHARE this post with anyone and everyone. I want this to get out to as many people as possible. My hope will never be in potential diagnosis; my hope will always be in Him. The final outcome is in His hands.
The gene that they found a mutation in is the HECW2 gene. There is a link above for other names that it could potentially be known as. You sharing this could have a LARGE affect on cutting edge genetics. If there is someone else out there with our mutation, we would love to know. There is a chance that they will begin to study the gene more thoroughly and be able to dispute this as exact cause; yet there is large suspicion that this could be it.
My hope is in Jesus.
My prayer is that this post would reach the masses.
This momma just wants to love these differently-abled, fearfully and wonderfully made girls as fully and best as I know how.
PLEASE contact me (His Hands His Feet His Heart facebook page or comment on this post) if you have any further information.
As always, to God be the glory.