31 Days of SMA: Confronting an SMA Diagnosis

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by Kevin Schaefer |

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Day 4 of 31 Days of SMA⁣⠀⁣⁣ Topic: Confronting and SMA Diagnosis⠀⁣⁣ This is Byron's Story:⠀⁣⁣ ⠀⁣⁣ It's March 19th, 2015 and I am standing in line to check out at the store, and my phone rings my wife is on the other end, and for as long as I live, I will never get the anguished sound of her voice out of my head. Two weeks earlier, our youngest daughter Lucy Mae had blood work done to determine whether or not she had Spinal Muscular Atrophy (SMA). On the morning of March 19th, the doctor had called to confirm what we feared most. Our lives would never be the same again. I remember sitting at the dinner table that evening, numb from crying and feeling utterly hopeless. The phrase “God will never give you more than you can handle” came to mind, and I thought “well that’s a lie because this is way more than I can handle!” I was angry, hurt, and lost. Fast forward two years. Its May 2nd, 2017, and my friend and pediatrician, is sitting in my living room delivering the news that my third child Lincoln Nash also has SMA. Same news but a different reaction. ⁣ ⁣ Although there were grief and tears, the feeling of hopelessness was absent. Shortly after Lucy's diagnosis God in his providence provided a way for us to be a part of a drug trial for a new medicine called SPINRAZA that had already greatly improved our little Lucy’s life and we knew that if we could get Lincoln on SPINRAZA there was a great chance Lincoln would be ok. Two SMA diagnoses two different responses all because of the grace of God in giving us men and women with the ability to create lifesaving drugs! I have two children with SMA, but I no longer feel hopeless there is a bright future for my children one filled with hope and endless possibilities and I thank God every day that I get to be their father! They have taught me about what really matters in life. Through our journey, I have learned that God will give you more than you can handle at times, but he also gives you the grace and strength to handle those things as they come.

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About the Author

Kevin Schaefer avatar
Kevin Schaefer Kevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.

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31 Days of SMA, Byron Potter

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