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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 1 month, 2 weeks ago by Patrick Lenihan.

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    • #24452
      DeAnn R
      Keymaster

      Today’s 31 Days of SMA features one of our forum members Mike Huddleston. Not only does he share his journey with SMA type 3, he touches on the emotional toll losing the ability to walk takes. Despite never having walked, I can relate. I had a similar reaction and feeling of defeat with my feeding tube. Although losing abilities seems devastating, Mike suggests shifting your focus. By looking at the positives you can have a bright future filled with opportunities. Have you struggled with losing abilities? How have you coped?

    • #24462
      Patrick Lenihan
      Participant

      I handle the loss of abilities like I handle the death of loved ones. I mourn. I cry. I adapt and eventually move on. With the passage of time, I usually remember fondly the memories of using my now lost functions although at times there are some pangs of sadness.

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