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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.

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    • #24458
      DeAnn R

      If I didn’t have to pee or eat, I’d be golden. Unfortunately these tasks are a requirement for sustaining life. Therefore I need assistance to accomplish them to stay alive. In my case I count on PCA’s, or personal care attendants, to help with my daily needs. Just when I get comfortable with my group of people inevitably disruption occurs. I dread when this happens because it’s not easy finding replacements.

      My daytime PCA was offered full-time at her other job, so I’m on the hunt for a new one. Needless to say the current health crises isn’t making it easy. Posting at the tech school is out. I think I lost an interview because of my requirement to wear a mask. Don’t even get me started on the limited wages I can offer. Fortunately one of my former caregivers has agreed to fill in for the interim.

      So far I’ve only had 4 inquiries about the position. One didn’t respond back. One is allergic to cats. The other two did set up interviews. However out of those two the first was a no show and the second cancelled because she found another job. Oh the joy. Even when I do find someone I’m not looking forward to training them in. Most people can probably recall how many people have seen them naked. Honestly I have no clue. I could probably compete with top strippers at this point. No two people wipe a butt the same either.

      Somehow, someway, it’ll all come together. It’s just one of those aspects of disability that sucks. Do you have any tips for finding PCA’s?

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