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The importance of newborn screening for SMA

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.


This topic has 6 replies, 3 voices, and was last updated 1 year, 1 month ago by Crystal.

  • Author
    Posts
    • #19948
      Crystal
      Participant

      So I was reading Kevin’s newest blog post about how to hug someone in a wheelchair with a robotic arm and one of Kevin’s tips was to be careful not to knock the joystick, which reminded me of one of the most terrifying moments of my life. I was in fifth grade and riding the school bus. Since I didn’t have a whole lot of time to do all the homework assignments that my teachers gave me while also being in the school choir, I rode the bus with my tray on my powdered wheelchair so I could homework on my home from school. Well one day, I was on the bus’s lift (still in the air) when my tray suddenly came loose and got caught on my joystick, jolting my chair forward. I usually have terrible reflexes, but for some reason I acted super quick that time. I reached over real quick and turned my whole chair off, stopping it right before it would’ve gone off the lift and into thin air. My mom and bus driver praised my fast reaction but I just sat there feeling very much alive for the first time since I had found out that my crush didn’t like me back.

      I went into school the next day not caring what my crush thought about me.

      I actually enjoyed my day at school and choir practice.

      And I’ve never had my chair on with the tray on at the same time since then. Lol

    • #19952
      DeAnn R
      Keymaster

      Scary! My joystick is on pretty much all the time, so I’ve had my share of incidents as well. Luckily the only injury was when I twisted my ankle when my cat decided to drive me into the futon. Glad that adrenaline worked for you and you escaped unscathed. Funny how close calls can shift life outlooks.

    • #19964
      Crystal
      Participant

      Yes, very true. Ain’t it weird too how we never really use our ankles but then when one is hurt we realize just how much gets done to it? I had a fractured ankle once and a sprained ankle once as well and I couldn’t even go to the bathroom without it hurting like crazy.

    • #19965
      Ryan Berhar
      Member

      I had something similar happen in second grade I believe it was. I bumped a table with my tray which caused my chair to drive backwards into the wall. My chair actually tipped forward as a result, as my chair at the time had tiny wheels in the back and very large ones in the front. I didn’t get injured, but my foot hurt really bad.

    • #19972
      Crystal
      Participant

      Ouch. Why do wheelchairs even have tiny wheels? They’ve only ever gotten in the way for me. Like you don’t see cars rolling around with different sized wheels, you know?

      • #19993
        Ryan Berhar
        Member

        My last two chairs have had six wheels. Two large ones in the middle, and two small sets in the front and back. This makes for great balance. My older chairs had some more wonky designs.

    • #20001
      Crystal
      Participant

      All my chairs had two big wheels in the back and two small ones in the front.

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