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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 3 replies, 3 voices, and was last updated 2 months ago by Alyssa Silva.

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    • #24317
      Alyssa Silva
      Keymaster

      This weekend, my family is hosting a Christmas in July party. My brother and his family have quarantined as well these last 4 months, so they have been our core group of people we have stuck by.

      Aside from the fact that the Silva’s are Christmas freaks, we decided to have a little party because we don’t know what things will be like pandemic-wise when the holidays arrive. We realize there’s a good chance we may not be together if a second wave hits (or things just get exponentially worse in RI) and if my brother has to report to the office full time again.

      Have you thought ahead like that? The northeast is on a downward trend with cases so we figured we’d use this time to be together while it’s a little safer.

    • #24341
      DeAnn R
      Keymaster

      I’m wondering how team training for my service dog will be held when the time comes.  It’s hard to know what the situation will be.

    • #24343
      Teri Taylor
      Participant

      I’m in California and it’s horrible here. I don’t let myself think about the holidays because it just makes me sad. I think we are in this mess for awhile.

    • #24349
      Alyssa Silva
      Keymaster

      Hm that’s a good point DeAnn. It’d be hard to train virtually, that’s for sure.

      Stay safe, Teri! We have some family scattered throughout California and are keeping a close eye on what’s been happening there.

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