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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 4 replies, 3 voices, and was last updated 5 months, 2 weeks ago by Brianna Albers.

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    • #22460
      Brianna Albers
      Keymaster

      Hi everyone! For Rare Disease Day, I wrote about one of my favorite stories. Long story short, my service dog accidentally pulled my G-tube out. We had to schedule a gastro procedure to put it back, but anesthesia issues — of course — meant that, instead of knocking me out, I had to rely completely on laughing gas. Unsurprisingly, I didn’t do much laughing.

      This column is a little graphic, so watch out for that! If you’re not up for reading about surgery trauma (I wouldn’t blame you), let me know in the comments what your rarest SMA story is. I love hearing about what makes people rare!

    • #22473
      DeAnn R
      Keymaster

      I like your take on what makes you rare. Certainly a unique story to tell. I always worry my cat will get tangled up in the tubing and pull mine out. Hasn’t happened yet. She did sprain my ankle though by leaning on my joystick and driving me into a futon. I laugh that my dog broke my arm and my cat sprained my ankle. Sounds far fetched, but true!

    • #22480
      Alyssa Silva
      Keymaster

      I don’t know that my brain is up to sorting through the many rare moments in my life right now, but glad you were ok after the g tube fiasco!  I liked your little twist at the end about how maybe it’s the stories that make us rare and not so much us.

      Ps- My service dog is part lab and EXTREMELY driven by food. I was told it’s part genetics and part a female dog thing.

    • #22499
      Brianna Albers
      Keymaster

      Oof! I always sprained my ankle once because a neighborhood dog wrapped himself around my chair 😂 Not fun!

    • #22500
      Brianna Albers
      Keymaster

      Omg that’s so funny! I mean, I can’t really blame either of our dogs – I’m also a hungry girl!

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