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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 3 replies, 4 voices, and was last updated 2 years ago by Ryan Berhar.

  • Author
    • #14113
      DeAnn R

      Insurance should cover a chair every 5 years.  My last chair I hated from the get go, so couldn’t wait for the 5 years to be up.  I love my current chair, so want to keep it going as long as possible.  6 years going strong.  Motors have been replaced once.  How about you all?  Do you jump at the chance for an upgrade?  Do you get so comfortable with your chair you’re apprehensive to change?  Are you loyal to a certain style or brand?  I went from rear wheel drive to mid and back to rear.  It just suits me best.  How about features?  All I have is tilt and I don’t know how I went without it so long.  Is color important?  My first chair was backordered forever because they couldn’t get red.  We said to send whatever, so got grey.  never dared go red since.

    • #14114
      Michael Morale

      It’s been about five years since I received my wheelchair. I think I’m going to call my wheelchair company that I use to ask them about the status of me getting a new chair. The one that they got me last time sucks and is not going to work at all, so I’m going to go with a different kind of chair, probably similar to the ones that I saw while at the SMA conference in Dallas. Those chairs looked really nice and comfortable. Thanks for jogging my memory about this. I need to make a few phone calls this coming week.

    • #14118
      Kevin Schaefer

      5 to 6 years is also pretty standard for me. My last chair was great, but eventually it came time for a new one, and we really had to fight insurance for it. They ignored the five-year rule, and as such it took me longer to get the one I have now. I’ve heard from others that insurance companies have become more difficult in regards to approving new wheelchairs.

      The big thing for me is comfort. I have to make sure that the seat is right, and that the joystick is in a good place for me. Permobil has been the best company by far to work with.

    • #14128
      Ryan Berhar

      Every five years is how it’s supposed to be, but unfortunately, I had a scare with this last year. My private insurance would not cover a new chair. I loath insurance companies with all that I am. Anyway, after months of no new chair, Medicaid covered it. I feel like maybe I should start the process of acquiring a new chair already, so I might actually have it four years from now. Lol

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