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  • deann-r

    March 31, 2018 at 11:05 am

    From the sound of it, many diagnosis stories do have a lot of similarities.  For my parents, the alarm bells rang when I wasn’t standing up or walking.  Mom knew something wasn’t quite right and had to convince the doctors.  My older sibling reached all of those milestones in a timely fashion.  Finally after 3 visits they conceded something was wrong, so sent me to a specialist where a muscle biopsy confirmed SMA.  Back in the early 80’s that’s how they did it.

    Of course their reaction was shock, but also a little bit of relief.  Looking back it explained a lot from my “snake” crawl to my chronic illnesses.  What was difficult for them was if they should still consider expanding their family.  Having two girls, they had planned to  try for a boy.  They decided to roll the dice.  When my little brother was born my parents were told he was perfectly healthy.  At a few months old the doctors changed their tune when my brother developed an abdominal hernia.  He too had SMA.  Despite the hardships, my parents wouldn’t have changed their decision.

    Stories are important to share not only to connect those of us who have SMA, but also for parents who have or are going through some similar situations.  I’d love to hear your story!

    • kevin-schaefer

      April 8, 2018 at 12:34 pm

      Thanks for sharing! For me, I’m the third (and youngest) sibling in my family. When I initially showed difficulty moving and crawling, my parents weren’t alarmed immediately because my brother (both my siblings are able-bodied) took longer than usual to walk. The moment my Mom knew something was off was when I was about 18 months old and playing with my friend (same age). He was zipping around the room, while I was struggling just to crawl.

      The diagnosis was of course hard for my parents to take in at first, and keep in mind that the research back then was nothing compared to what it is today. My parents were pretty much on their own when it came to the research, finding resources, finding a specialist, etc. Things have come a long way since then, and it’s amazing how many resources exist today. And hey, while it was hard to take in then, I’m living a great life today.

      Keep the discussion going!

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