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A Ripple of Influence5/7/2020 Written By: Melody Jonas Romans 8:28 English Standard Version (ESV)
28 And we know that for those who love God all things work together for good, for those who are called according to his purpose. This has been one of the hardest scriptures for me to comprehend and trust, and I still struggle with it today. Growing up, my oldest brother, Izzy, had a disorder known as Duchenne muscular dystrophy (DMD). Those with DMD are lacking a vital protein known as dystrophin, and this leads to muscle wasting. Children tend to be diagnosed by the age of five, spend roughly half of their lives in a wheelchair, and pass away in their twenties. Unfortunately, this is also genetically inherited. DMD is an X-linked recessive disorder, which means females can be carriers - they can carry the mutated gene, although they may not be impacted by it, and they may pass it down to their children. Having a brother, cousin, and uncle who suffered from this disorder, and recognizing the magnitude of what they endured has made it incredibly challenging to cling to the idea that everything works together for good. However, their lives were not meaningless and their presence certainly did not go unnoticed - they each left behind a ripple of influence that continues to impact all of those who encountered them. While their story may not have been how I would have imagined, or what my family endlessly prayed for, they were loved, radiated joy, and had unique God-given qualities. My mother has reminded me time-and-time-again that it is not possible to put God in a box, and there are situations we cannot explain - they are out of our range of understanding. As I am writing this, my computer screen is softly glowing the words "Lab Processing." I have recently begun my journey in discovering if I am a carrier of Duchenne muscular dystrophy (DMD), and it has been a long, twisted, uncomfortable experience. I have a 50/50 chance of carrying the mutation that has impacted two generations of my family, and I will know soon if it will now be three generations. Throughout this entire process, I have had to dig deep to find patience and faith. I have run into a plethora of obstacles, including being initially told my insurance would not pay for it, there were not any near-by locations accepting new patients, that my mother would have to be tested first, and my primary care physician was not willing to use the lab Children's Mercy recommended. Ultimately, my mother's test results came back quickly, Children's Mercy was willing to work with me directly, and between my mother and me, we will only have to pay $100. Even in a situation that seems endless and dark, these were huge blessings that I may have missed in the moment. No matter what the results are, I am surrounded by a pool of support. I am incredibly grateful for the resources to be able to go through genetic testing and be provided with answers to questions that my mother, aunt, and grandmother did not have access to. This is not a lack of faith - God and science are intertwined, and having this opportunity has been a blessing. If I find out that I am a carrier, this may put Alex and I in the position to adopt a child who would not have otherwise had a family. Without knowing Izzy, I would never have had an early appreciation for the value of life, in every design. While it can be difficult to see in the midst of turmoil, I am gaining a better understanding of how everything is, ultimately, working together for good.
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