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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 11 months, 4 weeks ago by Crystal.

  • Author
    Posts
    • #20786
      Crystal
      Participant

      Okay I was not expecting this to work. I’ve been trying to get Alexa to play When You Love A Woman by Journey but I couldn’t cuz I have a very bad speech problem so instead I pulled up Google translate and typed in “play When You Love A Woman by Journey” and turned my volume all the way up on my tablet and then I said “Alexa..” and then clicked on the little microphone and so the voice said “play When You Love A Woman by Journey” real loud and now Alexa is actually playing the song. 😂😂😂 Also now I know how to say “play When You Love A Woman by Journey” in German. Lol. Wenn du eine Frau auf Reisen liebst. Pronounced like “ven Doo nine(without the first n)uh frow owf rise-n leeb-st.

      Anyway so that reminded me of Kevin’s blog post about finding ways to do “simple” everyday tasks like turning pages in books. It was yet another great post from him that was very relatable and I knew I related to it the first time I read it but I didn’t realize how funny those situations can be. Lol.

      What about y’all? Any more funny situations only us go through?

    • #20788
      Halsey Blocher
      Participant

      Crystal, that’s genius! I would have never thought of that!

    • #20789
      Crystal
      Participant

      Thank you! I can’t believe I thought of it myself. I’m not usually the brightest crayon in the box. Lol.

    • #20790
      DeAnn R
      Keymaster

      Fantastic! Don’t you just love it when you come up with something like that and it works. Hey, you might learn a second language along the way. Guten Tag!

    • #20791
      Crystal
      Participant

      OMG do you know German?! I’ve been working on learning it for a while now. I’m in love with the language and the culture. I mean, I am part German – a very tiny part. Lol. But still, I love all things German.

      I’m also in love with Romanian but I’m having a hard time with it. 😔

      • #20795
        DeAnn R
        Keymaster

        I only took German in high school. Forgot most of it. What stuck with me most is a phrase our chemistry teacher taught us when he was subbing one day, ha ha. Let’s just say it won’t come in handy.

    • #20800
      Crystal
      Participant

      Lol. Learning a language in school sounds so much easier than trying to find everything on your own.

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