31 Days of SMA: Spinraza

31 Days of SMA: Spinraza

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Day 27 of 31 Days of SMA ⁣⠀ Topic: Spinraza ⁣⠀ ⁣⠀ This is @armsforasher story:⁣⠀ ⁣⠀ Asher was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, three days before he was to age out of the IsisSMNRX clinical trial. We barely had time to process the devastating news of the terminal diagnosis before turning our infant and only son over to science for research. This phase of the clinical trial had minimal human research having barely moved on from mice and monkey studies. Less than a month later we were in a procedure room surrounded by strangers, one of whom was about to perform a spinal tap on our six month old son. Before injecting an experimental drug guaranteed to cross the blood brain barrier, the doctor must remove 12mg of Asher’s spinal fluid. And so it began, our clinical trial journey.⁣⠀ ⁣⠀ It was difficult to wrap our minds around the idea that our infant son was a guinea pig for science. Thankfully, we were propelled toward something bigger than ourselves and that helped keep us going in spite of the fear. Undeniably, we put Asher in the trial because the alternative was the grave. It seemed only right to take a chance to possibly change the fate of our child. But more importantly, we put Asher in the trial for others, for you reading this, because we had hope that this drug could be a small step in human evolution to benefit all. The idea that the clinical trial could pave the way to a breakthrough for the SMA community ignited unbelievable hope for us. We had no idea if the clinical trial could save our boy but we had hope that it could save the future.⁣⠀ ⁣⠀ In less than three years, IsisSMNRX became an FDA approved drug called Spinraza. The hope we envisioned for others and only imagined would be available in years to come now sits in our living room playing video games; stands brushing his teeth; plays with his sisters; laughs; smiles; and lights up our world. Asher lives with almost 20 injections of Spinraza in his body and a lifetime of hope in his genes.⁣⠀ ⁣⠀ Photo credit to Jennie Ellis Photography.

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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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