Mabry Kate was born a happy and healthy 8 lb. baby on March 13, 2014. Everything was seemingly fine for almost 3 months. She was smiling, cooing, reaching, grasping, and accomplishing many other developmental milestones as most babies do. On June 3rd, she was admitted to a hospital for a simple urinary tract infection, and from that point on her development went progressively downhill. We searched for answers for about three months in Knoxville going to all sorts of specialists from neurologist and geneticists to endocrinologists and cardiologists. We finally sought answers elsewhere in Cincinnati, Ohio at their children's hospital where we met with a team of doctors. We thought that was best for her because she was having such a variety of symptoms. After one visit, Cincinnati was able to give us the answers we have desperately been searching and waiting for, but they were and still are devastating answers we could have never dreamt of. Our precious angel has krabbe disease. It's a very rare genetic disease that usually takes the life of a child anywhere from 6 months to 2 years of age. This disease and other leukodystrophies are not included on the newborn screening in Tennessee. Had they been and this been caught early, her life could have been saved, as stem cell transplants can reverse the disease. Babies born with this show normal development for the first few months, and for some the first few years, followed by progressive loss of development. Once the loss of development begins, it cannot be reversed. Though our baby girl started losing these milestones at around 3 months of age, we feel so blessed and fortunate to have seen her beautiful smile complete with the most precious dimples, and feel the utmost happiness in our hearts at the sight of it; however, our soul aches at the thought of not ever seeing it again during this life. Fortunately, as followers of Jesus, we have this thing called hope. We have hope for when Jesus calls her home, that we too will be called home one day, and we will meet again and she will be smiling at us as we run to scoop her up into our arms. We have hope that this life is far shorter than the eternity we get to spend with her in Heaven. And we have hope that she is going to be in a much better place than we could ever fathom giving her here on earth. She is truly a God given gift. She has taught us more than anyone else could have tried to teach us in any area of life. We hope that she can give you hope through Jesus Christ for your eternal future. We thank you for your continued prayers. This is by far the hardest situation we have and will ever go through. Our hearts burst open with love for her, so much love that can't be described. Please continue to pray. We are going to love on her as much as we possibly can. We do know that our God is a God of miracles, there is still hope for that. But no matter the outcome, she is our miracle, for she has our hearts and has already strengthened our faith. She is our heart.
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