Life Update - Evrysdi

As many of you know, at 15 months old I was diagnosed with a rare form of Muscular Dystrophy. I was given a year to live. I believe there was a bigger plan for me, and many factors have allowed me not just to survive but to live a very full life.


I’ve never researched my condition. I don’t want to know what may or may not happen. The future is uncertain for all of us - LIVE and LOVE NOW ❤️


The reality though is that Spinal Muscle Atrophy (SMA) is a progressive and irreversible disease process. One missing protein changed the course of my life. Although there is no cure, Friday I started a new drug called #Evrysdi. This medicine is introducing my body to the missing protein day by day. Will I be running marathons someday? Not likely 😉 But the #hope is that the progression slows or even slightly reverses. All my life I’ve never had a treatment for my disability. Although I am experiencing some issues, I say let’s see what happens!? Asking #TeamAlli for prayers and good vibes as my body fights the good fight 💪🏻 #StayStrong


Made this little video for #Instagram and #TikTok! Are y’all on there? Give me a follow? @AlliJD3 ❤️



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