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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 2 replies, 2 voices, and was last updated 7 months, 2 weeks ago by Alyssa Silva.

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    • #22224
      DeAnn R
      Keymaster

      Wheelchairs wreck flooring.  When I moved into my house I quickly had to replace the plush light blue carpeting with a darker color low pile version.  I still track in, but at least it’s not as visible.  In general I don’t wipe off my tires unless they’re really muddy.  I might make a couple turns on the rug by the door hoping it’ll help.  Winter and spring are the worst with all the snow & slush.  It’s been so icy here I’m even tracking in salt.  My Mom makes me melt off on a rug at her house before I can go through the house & I have to avoid carpet if my wheels are wet or dirty.  You definitely need shoes or slippers to avoid stepping in a puddle.  What do you guys do about sloppy tires?  Any tips on avoiding tracking through the house?

    • #22235
      Tracy Odell
      Participant

      I stay in the kitchen on the tile floor for twenty minutes or so until the snow melts off my wheels, and then the tiles get mopped off. If I’m in a hurry, though, I will get them wiped off with a towel.

    • #22239
      Alyssa Silva
      Keymaster

      My poor hardwood floors are completely ruined from the salt my chair brings in. Sometimes I have someone hose my tires down outside if they’re really bad, but because I don’t sit in my wheelchair all day, I usually just park it in my room and get transferred out. The rug in my van is also completely torn apart. For that, I went to Staples and bought one of those plastic office mats and had my van’s mechanic install it for me.

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