I appreciate your column on this, however I must be the oddball in the group because I never dreamed, or thought about it for that matter, of a cure, treatment, or walking. I guess my parents instilled in me at a very early age an identity as a disabled person. In my 20s and 30s, I questioned that approach and even got a little angry at the by-product that was the removal of hope in a child so young.
But now in my late 50s, I have altered my perception and come to understand my mother’s way of method. She was trying to motivate me to be the best person I could be and strive for whatever I wanted with the many abilities I had. Thinking about a cure or walking in the future was never in the picture. While past generations didn’t come into my realm of existence in that manner, I did wonder around telethon time every year what if the ones who had died had lived instead.
Now that I’m on Evrysdi myself, I have thought about the SMAers who came before me. But it’s been in more of a where would the world be now if all of the treatments had come along back then kind of sense. What advancements would these therapies have already caused to happen in the medical field? What contributions to society would those with SMA have made if they had been able to live their full lives?