After a full term, healthy pregnancy, free from any medical complications, on October 30th, 2016 Tory and I welcomed our precious Baby Boy Braxton into this world! Unfortunately, our excitement over the birth of our newborn baby would quickly diminish, being replaced by constant worry, heartache and fear. Immediately after birth, Braxton began showing adverse neurological signs, was failing to maintain his own oxygen which required the placement of a feeding tube, along with many other health complications. We would soon learn that the first few months with our newborn baby, would be spent in the NICU battling many health complications. Upon finally being able to take our baby home from the NICU, Braxton continued to suffer with health complications and on going neurological impairments. A permanent feeding tube was placed and seizures would quickly find their way into our home. Braxton’s on going health complications resulted in many hospitalization with little signs of response to medical intervention.
In desperate hope for answers, complex genetic testing we performed. We would soon receive life altering news, as our geneticist informed us that both dad and I, passed our son a non working UBA5 gene. Although we were relieved to finally have answers, devastation and heartbreak would soon consume our life. as we were given the news that Braxton has a Life threatening, very rare, progressive genetic condition, that has caused him to develop Early Infantile Epileptic Encephalopathy Type 44.
His genetic condition is degenerative and expected to progress in time and there currently is no cure. Braxton struggles with daily uncontrollable seizures, severe intellectual disability, requiring him to be dependent on a feeding tube, poor vision, and he requires 24 hour care. Due to the brains inability to function properly, Braxton has now developed problems with his heart, kidney, and respiratory.
In his short two years of life, Braxton has faced many health battles, including long hospitalization, amounting to 200 (and counting) days in a Childrens Hospital where he continues to battle an array of health conditions. We have and continue to work effortlessly to manage underlying diagnosis and symptoms that are in result of his genetic condition.
As a two year old little boy, Braxton has faced many challenges with unbelievable odds, and continues to beat them all. Despite the difficult and often trying journey, we strive to always enjoy the son God blessed us with while keeping our Faith in the future and never losing hope in Gods plan for our family.
We have strived to maintain normalcy for our family. Beyond the emotional repercussions, our journey with recent unplanned hospitalizations is starting to take a major toll financially. When a loves one has a long term chronic illness, there often is the lose of one income, as the partner or parent takes on the responsibilities of providing 24 hour care, to their sick loved one.
While being forced to rely on one income, extended stays in Columbus including a four hour round trip , have always put us behind financially, but through the grace of God, we’ve always managed to climb back out of it. This time around there are some on unexpected expenses such as maintenance that needs to be done on my vehicle, so that I can continue commuting to Columbus.
Your prayers along with the hope we have found in God, has carried us this far. Although it’s not comfortable to ask for help, I know so many of you have asked if there’s anything else you can do.
Right now, our biggest need beyond prayers for Braxton is the ability move forward financially with the goal of being able to sustain a better financial future with for our family.
Thank you so much for your support as it has been such a source of strength, hope, and love. We are eternally grateful for each of you!
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