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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, 3 voices, and was last updated 2 years, 2 months ago by Michael Morale.

  • Author
    Posts
    • #13102
      Krista Brodeur
      Participant

      <p style=”text-align: right;”>My name is Krista and I am 35 years old with type 3.</p>
      I am currently in the process of getting a colostomy. Thanks so much for having me!

    • #13103
      Kevin Schaefer
      Keymaster

      Hi Krista! Thanks for joining us.

      I saw your post earlier. Sorry you’re dealing with those health issues, but I hope that the colostomy might help. Keep us updated on that.

    • #13104
      Michael Morale
      Keymaster

      Krista, I have a colostomy. Let me know if you have any questions.

    • #13106
      Krista Brodeur
      Participant

      My issue at this point, is my classification as morbidly obese! I can’t eat all day, and don’t dare eat due to no caregiver around. So I eat once a day, usually before bed! Yup that’s a great weight loss tool (eye roll) anyway, I need to be able to eat to loose weight. When I do eat, I make healthy choices but it just isn’t enough!

      My surgeon wants to see if there’s any other options. However, I’ve done a lot of research and I just can’t see anything else!

      The surgeon is concerned because of what shape I might be in when this is over. Well, I’m concerned more about the mental state I’ll be in once I have zero control and zero help! But, like a lot of doctors he doesn’t seem to understand!

    • #13265
      Michael Morale
      Keymaster

      Krista, how are you doing? It’s been a little over a week since your last post regarding the possibility of you having to get a colostomy.

      I’ve had my colostomy for many years and to be honest with you, it’s been the best decision of my life. I’m able to go out and do things with my family and friends, because I no longer have to worry about having to go home to go to the bathroom. I’m not saying that I have not had my challenges with regards to the colostomy itself, but overall, my life is much better with it, than without it.

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