psychodynamic1

Was it clear for your family at the outset that this was SMA1 vs. SMA2.? I've worked with SMA before and helping parents with losing their children. It's really rough.

Also, I'm wondering if the disease affects your speech and if you've ever used a device to speak. And one more ... did you go to public school and what were the accommodations like?

That must have been very scary for your mom ... and I have worked with those parents whose children have the SMA1 diagnosis. I'm glad they were wrong.

Also, glad to hear that you had a para working with you and that your speech is unaffected. Thanks for taking the time to answer!

This reminds me about how some Buddhists talk about not wishing suffering on anyone ... that suffering can be one of our greatest teachers and educate us as to the value of our humanity.

You're right. It does seem contradictory. However, in my opinion, those people who have been through difficult things, and have learned from them, come out wiser than those who never had the difficult experience. That being said, we can go through difficult things by witnessing others ... and learn from that too. I hope that clarification helps.