“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.
http://www.ncbi.nlm.nih.gov/gene/57520
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.
Seeds and Leaven 
I wish you strength on your continued journey.
It sounds as though you had Genomic Sequencing perhaps through their Undiagnosed Diseases Program.
We have a similar program here in Huntsville AL at Hudson Alpha.
I return results to families like yours. Although it brings the search for the reason to a close, I always feel that I have still partly failed because I can offer no therapy.
I wish you and your family the best.
Morgan what an Angel you have become in my life🙏 Your fervent faith, your amazing strength and your love for your children and to be willing to share your journey is truly from Our Heavenly Father 🙏 I cherish every word you write and I have read your book many times and keep it by my bedside so I can go to it for your empowerment that helps me🙏 I’m sharing your book and plan to order eight more books this week❤️ I have a friend that I gave a book to and she and I go over so many points that have truly touched our lives🙏
God Bless You and Please Continue Writing and Know I Care Deeply🙏
Love and Prayers,
Debbie
My heart goes out to you and your family – a genetic disease can be a tremendous burden to carry. That said, I find it odd that you would think that “God” has done this to your kids??!!! I mean, if He did – one can only interpret this as God being a malevolent deity to do such a terrible thing.
Wouldn’t it make more sense to just chalk this up to an uncontrollable event that occurred naturally? There’s no reason for this, at all. I mean, either God did this to your kids (in which case He’s a horrible deity) or He had nothing to do with it. Pretty simples.
Oh, Anthony. My heart goes out to you as I know how it feels to not understand the “otherness” of God and His ways. I would love to be able to have a lengthy conversation with you on this, as it would be impossible to discuss without us knowing one another. That being said, my book, On Milk and Honey, is available on Amazon and definitely touches the surface on these very real and common thoughts you have shared. Thanks for reaching out!
Just found out today our dauggter has this same mutation. Can we connect?
My 2 yr old Daughter also has the HECW2 mutation. She is unable to walk, stand or even sit unassisted. Happiest lil girl I’ve ever seen though!! I too would like to learn more about what affects my daughter and reach out to others!
Sonya there is a group on Facebook. It’s HECW2 mutation. I am currently not on Facebook much but if you ask to be approved you will be able to connect with a few!