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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, 5 voices, and was last updated 8 months, 3 weeks ago by Crystal.

  • Author
    Posts
    • #21897
      Crystal
      Participant

      Hey guys, so I just read Kevin’s latest blog post about the interactions he’ll never forget and it reminded me of the interaction I had with my cousin who just turned 5 years old in December. Carson (my cousin) and my uncle came over for Thanksgiving and while everyone else was in the kitchen eating, me and Carson stayed in the living room playing a “game” he made up using Uno cards cuz apparently he didn’t want to eat and I can’t eat. For his game, he kept the Uno cards in a stack and was drawing a card. Each number card he would count or I would help him figure out what it was, but apparently all the wild cards were considered bad in his eyes and he would stack them away from the good cards. Eventually he ran out of room for the wild cards and made a different stack next to me so that he could pass them to me so I could put them in the stack for him. The problem? I couldn’t reach the stack with my left arm like a normal person would so I had to use my left arm to help me pull my right arm over with the card in my hand and slowly put it in the stack. When Carson first saw me do that, he stopped what he was doing and stared at me while he seemed to be in deep thought. Then he started talking to himself saying, “It has arms… It has legs… It has a face… Soooo it must be human… Hmmm?” I couldn’t help laughing so hard I snorted, which made him laugh like crazy too. Then he hugged me like he always has done. I’m glad to hear that he considers me as human. Lol. He is precious. And hilarious.

    • #21898
      Kelly Miller
      Participant

      Crystal, I wouldn’t be surprised if Carson grows up to be the next Quentin Tarantino!

    • #21899
      Alyssa Silva
      Keymaster

      Hahaha! Carson sounds adorable.

      I definitely resonated with Kevin’s column. There are so many stories I could share similar to his (and yours!), but one that always sticks with me is when my little cousin had yet to learn I couldn’t walk. He’d always come over and dance with my mom in the living room. I’d lay on the couch, watching and singing along to the songs we’d play. But, he couldn’t understand why I wouldn’t join in. I’d tell him I liked watching, but 9 out of 10 times, he’d come over and pull my arm, trying to get me off the couch, yelling “Wyssa [Alyssa] dance! Dance Wyssa!” He must have been around 3 years old.

      Now I have a nephew who is 2.5 years old so I’m curious to see how he starts responding to my disability!

    • #21902
      DeAnn R
      Keymaster

      That reminds me of when my twin nieces were little (they’re 15 now.) All I had to do is break out the stern voice and they’d listen better than they would to others who actually could take away the toy or put them in timeout.

    • #21903
      Crystal
      Participant

      Lol, DeAnn, that was me with my brothers whenever our dad left me in charge when he left for a while, even though I was the middle child. Unfortunately, now my brothers know they’re stronger than me. 🙁 Lol.
      Kelly, I love Quentin Tarantino!
      Alyssa, the more we are around kids while they’re young, the more comfortable they are around us while they’re older. They’re adorable so I’m sure that won’t be a problem. Lol.

    • #21904
      Halsey Blocher
      Participant

      Crystal, that’s adorable! Kids really do say the cutest things!

      My niece is five as well. I remember there was one time (maybe about a year ago) when my told her she was going to help take me to the potty and she’s be right back. My niece immediately declared, “Halsey doesn’t need help going potty!” Now she thinks nothing off it, but at the time, it was pretty funny. She was just starting to use the bathroom completely by herself, and so she couldn’t think of why an adult would have someone go with them.

    • #21926
      Crystal
      Participant

      Awe that’s adorable, Halsey!

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