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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, 4 voices, and was last updated 1 month, 2 weeks ago by DeAnn R.

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    • #24498
      DeAnn R
      Keymaster

      In today’s 31 Days of SMA feature Amber Bosselman talks about how embracing SMA has shaped her life. For the most part we can be our own worst critics. When we can accept ourselves we can enjoy what life has to offer. Do you embrace SMA?

    • #24503
      Teri Taylor
      Participant

      While I am not the one in my family with SMA, I embrace it with my 10-year-old grandson, Charleston!!!! I have to be honest that I was angry, hurt, mad at God, didn’t understand WHY, etc. when he was diagnosed as a baby. But let me tell you what — my grandson has taught me what unconditional love really is!!!! He’s changed my life for the better in so many ways. Without SMA, he wouldn’t be who he is, and I wouldn’t be who I am.

    • #24504
      Nikki
      Participant

      Embracing SMA is a process. I’m 51 and was diagnosed at age 3 and I still have struggles with what I think I can do, should be able to do and in actuality can’t do. For my mature age, accumulating accomplishments is important in our society. But I’ve learned to accept that it takes me much longer to meet deadlines and be ‘camera ready’ than most and it can frustrate me because often times I miss opportunities. Dealing with challenges is more mental work then anything. I say this because I’ve learned that it’s more myself that places these inhibiting expectations because when I handle myself with grace and acceptance, the people around me embrace me with ease and reason. So being kind to ourselves in our disease helps the world around us love easily.

    • #24505
      Alyssa Silva
      Keymaster

      I very much agree with what Nikki said. I have learned to embrace SMA, but I have bad days too. Trying to remember to give myself grace on those days.

    • #24508
      DeAnn R
      Keymaster

      Thanks for all of the perspectives! I don’t really think that any of us are like, “Yay, SMA is great.” Not only can it be physically challenging as Nikki pointed out the mental challenges are just as trying. But like Teri says it makes us who we are. Alyssa, bad days are inevitable. I love how you put it, on those days give yourself grace.

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