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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 8 replies, 5 voices, and was last updated 6 months, 3 weeks ago by Adnan Hafizovic.

  • Author
    • #22524
      Alyssa Silva

      There needs no explanation for this one. Unless you live under a rock, then you are well aware of coronavirus and the global effects its having in our communities.

      At first, I wasn’t all that nervous. Even though statistics show that coronavirus kills more lives than the flu percentage-wise, I know the media thrives on blowing things out of proportion. However, the weekend my home state (RI) reported its first case, and now its a little too close for comfort for me. My biggest worry is that it’s possible to be asymptomatic for a period of time.

      What do you think? Are you worried about this new virus?

      The girl who got H1N1 in 2009

    • #22530
      DeAnn R

      Worried yes, panicking no.  Because I’m beneath the “underlying condition” umbrella that seemingly is feeling the brunt of it, of course it’s concerning me.  Unfortunately it’s out of my control.  As you know I’m a bit of a germaphobe, and this certainly won’t help.  People really don’t know how often they touch their faces then other objects.  Oftentimes they don’t realize or admit when they’re ill either.  That’s what makes it tough to contain viruses like this. The whole coughing into your elbow bothers me as well.  I just saw someone recommending an elbow bump instead of a handshake for a greeting.  All fine if you’re not coughing into your elbow…eeek!

      I’m just going to continue to practice my usual precautions and hope it is being blown out of proportion.  Maybe I’ll watch my favorite outbreak movies like Contagion and I am Legend while my hibernation mode is extended.


    • #22548
      Alyssa Silva

      We’re all mild germaphobes in my house too. Found out today that our friend was exposed to it, and she’s not feeling well herself. My father was with her last week. On the news just now, they announced 6 people have deceased in Washington state “all with immunocompromised conditions.” UGH— I hope this passes soon.

    • #22554
      Robert Stump

      Yes, I am freaking out more than I thought I would.  I’ve always felt like I’ve come to terms with having a reduced lifespan, and I dread each winter season knowing that if I catch something bad it could be the one to take me out, but this feels more like a slow moving train heading right towards me but I am unable to move out of his way.  Sure, there’s a chance I won’t get it, or even if I do it won’t be that bad, but I feel the same way about all of these so-called “underlying health conditions” that most of the people who have died from it have had.  I need more details on which health conditions are the most difficult to survive this with, though with my severely compromised lungs and my general weakness after living 49 years with SMA Type II, I feel I am a prime target for this one.

    • #22560
      Alyssa Silva

      I hear what you’re saying, Robert. It’s common to feel helpless in these situations. Stay safe out there.

    • #22569
      Adnan Hafizovic

      We in Bosnia have the crazy fortune of not having a single person with corona virus so far, although Italy is close, there are cases of diseased persons in neighboring Croatia. We like to joke and say that in Bosnia we seem to pray a lot to God. It just doesn’t need to panic and needs to increase hygiene care, and of course eat plenty of Vitamin C.

    • #22571
      Alyssa Silva

      I hope it stays that way, Adnan! Maybe send those prayers to the United States as well. 🙂

    • #22573
      Jim Schneider

      Just don’t want to become one of the statistics with those nasty underlying health conditions. Hibernate till summer!

    • #22585
      Adnan Hafizovic

      Alyissa we Bosnians like to joke, but of course we pray for Americans, and for all the people in the world.These bacteria don’t like the sun and the day, as soon as spring comes I think the corona will be gone.

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