31 Days of SMA: Confronting an SMA Diagnosis

31 Days of SMA: Confronting an SMA Diagnosis

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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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Kevin Schaefer is a writer from Cary, North Carolina with SMA Type II. He studied English at NC State University with concentrations in film studies and creative writing, and since graduating he’s been focused on freelance journalism as well as writing comic book scripts. When he’s not writing or consuming excessive amounts of comic books and movies, he enjoys spending time with family and friends and considers himself blessed that they put up with his ramblings. He is the youngest of three and lives with his parents and dog Pandora. The dog gets the most attention.
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Kevin Schaefer is a writer from Cary, North Carolina with SMA Type II. He studied English at NC State University with concentrations in film studies and creative writing, and since graduating he’s been focused on freelance journalism as well as writing comic book scripts. When he’s not writing or consuming excessive amounts of comic books and movies, he enjoys spending time with family and friends and considers himself blessed that they put up with his ramblings. He is the youngest of three and lives with his parents and dog Pandora. The dog gets the most attention.

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2 comments

    • Kevin Schaefer says:

      Hey Mary. To be honest, I rarely come across anyone with Type 4, so my knowledge of it is limited. I know that symptoms of people with type 4 tend to start showing when people are in their 30s and 40s, but I guess it’s possible to have a much later onset. Have you spoken with a neurologist about this?

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