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  • Family Photo Album Sparks Memories of SMA Challenges

    Posted by kevin-schaefer on January 30, 2019 at 3:00 pm

    Hey everyone, here’s Michael Casten’s latest column: https://smanewstoday.com/2019/01/30/sma-memories-family-photo-album/?amp.

    It’s always interesting for me to read Michael’s articles, and how the things Ella says compare and contrast to the things I said as a kid. I remember asking my parents questions about SMA, but I honestly can’t remember if I ever said things like “I hope I can walk one day.” It’s possible, but I don’t know if I did.

    At this point it’s not even something I think about. While I would like to get some of my upper-body strength back, I’m more than ok being in a wheelchair for the rest of my life. There are other things about SMA that I hate, but being non-ambulatory isn’t one of them. My wheelchair is essentially part of my body. Still, I’m always interested in reading Michael’s perspectives, and the stories he writes about Ella.

    What did you all think about this column? Did anything in particular stick out to you?

    deann-r replied 5 years, 4 months ago 3 Members · 2 Replies
  • 2 Replies
  • ryan-berhar-2

    Member
    January 30, 2019 at 8:34 pm

    She’s still so young. I hope she keeps that hope alive.

  • deann-r

    Member
    January 31, 2019 at 10:51 am

    Definitely brings back memories.  Like Kevin I don’t actually recall actually asking if I’d be able to walk.  Guess I figured it was what it was.  I did hate having to try to straighten my legs or being forced to wear braces.  Looking back I know it was with well intentions, however at the time an SMA treatment wasn’t even on the horizon, so I felt why bother.  Now it’s a whole new world for these kiddo’s.

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