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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, 4 voices, and was last updated 1 year, 3 months ago by Brianna Albers.

  • Author
    • #19381
      Brianna Albers

      Hi everyone! Alyssa’s latest column is up, in which she talks about bad days, good days, and the importance of honoring both. Driving to faraway coffee shops may seem strange, but for Alyssa, it’s a way for her to honor good days—she has the energy for a trip, and she has time to spare, so why not take advantage of decent health and be spontaneous? Then, when the bad days inevitably come around, she has the memories of road trips and coffee shops to keep her mood bright.

      I’ve been struggling with fatigue the past couple of days, so Alyssa’s column was posted at the perfect time. I often wish I felt better—had more energy, fewer headaches, so on and so forth. But the fact of the matter is that, with SMA, you can’t escape the bad days. They’ll always be there. But, on the flip side, good days will also occur! The important thing is to acknowledge where you’re at and make space for your health—whether it’s good or bad—in your everyday life.

      How do you honor your good days? When you have bad days, how do you care for yourself?

    • #19409
      Adnan Hafizovic

      The most annoying me when I feel good and I have no one to go somewher. And when I have a bad day then someone always calls me to go out and go somewhere. Usually when is the summer then I feel better and so I use the summer as much as I can.

      • #19502
        Brianna Albers

        That happens to me too! It’s so frustrating 😔

    • #19416
      Kevin Schaefer

      I love this column!

      I can definitely relate to taking advantage of good days. I just went on a day trip to Charlotte this past Saturday for a comic con. It was refreshing to be on the road on a sunny day, see friends, and not think about work. There are definitely days when something like training a new caregiver wears me out, so it’s good to have some spontaneous adventures on good days.

      Great column Alyssa!

      • #19503
        Brianna Albers

        That’s awesome, Kevin! I’m glad you were able to make it to the con. I bet that was a great experience!

    • #19424
      Ryan Berhar

      Man, I could have written this. Well, I haven’t driven to another state to get coffee (though don’t put it past me) but going to coffee shops is one of my very favorite activities. I also have those days that are just good, and it’s difficult to figure out exactly why. Other days are complete crud.

      • #19504
        Brianna Albers

        Same here! I’ve been going to coffee shops to work on my book. It’s a great way to get out of the house without expending a lot of energy.

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