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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 4 replies, 4 voices, and was last updated 1 year, 5 months ago by Katie Napiwocki.

  • Author
    Posts
    • #18855
      Kevin Schaefer
      Keymaster

      Hey everyone, here’s Katie’s latest column: https://smanewstoday.com/2019/05/13/beauty-routine-weak-hands-tips/.

      There’s a lot to unpack in this piece, and I like how Katie weaved together different topics. Here she addresses physical limitations, self-image, vulnerability, and how she adapts to the loss of physical abilities. I could definitely relate to the notion of struggling to be vulnerable about how SMA affects me, though my attitude here has changed tremendously in recent years. My hand dexterity and arm strength are both significantly weaker than hers, but the section where she brought this up really stood out to me.

      What takeaways do you have from this column? Can you relate to the ways that Katie adapted to her physical limitations? Did anything else here stand out to you?

    • #18875
      Halsey Blocher
      Participant

      I can really relate to making adaptations at the hair salon. My mom usually cuts my hair because it’s easiest to do when I’m laying down, something salons really can’t do. While my mom does a wonderful job, it’s nice to have it done professionally sometimes too. My mom’s stylist recently came up with a solution. Her salon also offers massages, so she approached one of the massage therapist who agreed to let us use her table on her days of so that I can lay down. It’s also in a kind of secluded room which allows privacy to disconnect my feeding tube so I can be layed on the table. It’s worked out really well!

      • #18927
        Katie Napiwocki
        Participant

        Hey, Halsey!  I love hearing about hair salon experiences because that seems to be a common obstacle for us!  And, the routine you describe sounds like a really awesome solution.  🙂

    • #18926
      DeAnn R
      Keymaster

      I can relate to several aspects of this article. I certainly don’t wear makeup as often as I used to, but on occasion it just feels good to glam up. I’m not that good at it, but like Katie I’ve found the tools that make it a little easier. Never have been able to do eyeliner though.

      Love all the tips sprinkled throughout the article. Hoping you can share the brand of hairspray she referenced.

      • #18928
        Katie Napiwocki
        Participant

        Hi, DeAnn!  I’m happy to hear you’ve found some tools to make applying makeup a little easier — do you have any other tips to add?

        The hairspray I’ve found with the push-forward nozzle is Tresemme.  I know it might sound strange, but I can’t push directly downward like what is typical of most hairspray cans.  With this one, I can sort of curl my finger around the back of the nozzle.  It also comes in a tiny travel-size can, which I’ve found in the mini product section at Target.  🙂

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