The thing that brought us all together was Spinraza, and I know one of the main purposes for bringing us together was to talk about how great it is. And there is nothing wrong with that - I'm a big fan of this treatment, and I'm excited to see how it will help me and lots of other people. I am thrilled to know that young children with SMA now have the chance to develop their motor skills, and that adults with SMA can maintain and rebuild their strength. I am so thankful to know that Spinraza is just the beginning - it has opened doors and increased research opportunities for other treatments and possible cures to be discovered. It's a miracle, and it is changing lives all over the world.
But my hope is not in a drug called Spinraza. Long before an answer was found, long before the FDA approved it, long before doctors were able to conclude their diagnoses with: "...but a treatment is coming soon," I found peace and hope and joy. It came in the form of a relationship and a promise - and it didn't ignore my disease, but it also wasn't contingent upon it. I chose to take hold of it as a small child, but it's taken a lifetime to understand. I've wrestled with it, desperately clung to it, and almost lost it at times... it's stretched and grown and deepened, at about the same rate as my muscles have tightened, shrunk and atrophied.
No matter how small, weak, sick, or unable I am or become, Jesus is strong and constant and great and mighty to save me. He promised never to leave me and never to let me go, and after all the things we've been through together, I can't help but trust him. He promised that he knows and understands me fully, and when I read and remember all that he sacrificed and suffered for me, I know it is true. No matter what else changes in my life and my world, his promises stay the same. His love, mercy, and faithfulness to me has never, and will never fail - this is my hope!
I'm thankful God has given me the chance to experience a treatment for my disease, and that I get to see his creativity, intelligence, and ingenuity through medicine and science. But whether or not Spinraza has any effect on my body, I know my life is purposeful and beautiful and valuable, because Jesus has saved me and made me whole.