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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 1 reply, 1 voice, and was last updated 2 months, 3 weeks ago by Alyssa Silva.

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    • #24373
      Kevin Schaefer

      Hey everyone! Hope you’re all having a great week so far.

      Check out my latest column here. I wrote about my mom’s recent knee replacement surgery, and how we’ve had to adapt accordingly. Normally my mom helps me during the day. Thankfully she’s doing a lot better, but it’s still been an adjustment. I also wanted to show my appreciation for all the wonderful parents and caregivers out there in this piece. Hope you all enjoy reading!

      Have any of you been in a similar situation? What do you do when one of your caregivers is out or on medical leave?

    • #24397
      Alyssa Silva

      Great column. Love the Home Alone reference.

      Last year, my dad was diagnosed with heart disease. We weren’t sure of the extent of it so he had to go for a catheterization and would be out of commission for a week. He and my mom split my personal care (along with some help we get from PCAs), so we had to adjust. On the day of the procedure, my mom got a cold haha. Like you said yourself, it was an “adventure.” We typically seclude whoever is sick to a bedroom, but that wasn’t possible this time around. My mom ended up using PPE (ohhhh the irony) to take care of me, and I managed to stay healthy.

      I’m glad your mom is doing better! Please give her my best.

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