Not just SMA, but many disabilities...people assume that because you have a physical hinderance that you must also have a mental one as well and are often treated like a child. My experience with meeting other individuals is very much the opposite...if anything individuals with SMA are typically more intelligent than the general population ...which doesn't say much lol.

Shitty doctors( f u to pennsylvania) are ready to write you off. They'll try to force unnecessary surgeries and medication on simply bc "that's what sma kids get" as well as a handful of scumbag doctors and nurses at columbia Presbyterian. You have to do your own research and fight for yourselves. Bad medical professionals think you're unworthy of effort, thst you won't be around that long, so why bother..we dealt with that when my son was diagnosed at 14 months. Now, he's about to be 15(oct), taking ap and honors classes in high school(home instruction), still talks and breaths on his own and occasionally get to take tiny bites of food. (Maimonidies cost him his ability to eat)
Stay strong, stay smart persevere

That you will Die. Not true. You can live a long life.

One misconception is people struggle to understand how you might be physically be able to do something one day and not the next. A person with SMA maybe maxing out their muscles, and they just give out for days or weeks until they build up reserves. It gives the effect that the person with SMA is being 'lazy' when in fact they were using up all their strength to do task that really should not have been possible with their level of disability .

For me, I think it’s all about getting understanding the love ones you have… like me married hardest thing for me is to keep trying to make her happy