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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 9 replies, 6 voices, and was last updated 1 year, 3 months ago by Halsey Blocher.

  • Author
    Posts
    • #19242
      Ryan Berhar
      Member

      Late last night, my chair broke down due to a joystick error. I’m fortunate in that I have a terrific wheelchair mechanic, and this turned out to be an easy fix. Ironically, my BiPap machine malfunctioned literally moments later. My BiPap quickly started working, and my chair was fixed late this morning, so, while I was bed ridden for the morning, neither incident turned into anything too catastrophic. Still, occurrences like these remind me of how delicate my life truly is. It’s not an exaggeration to say that my ability to live is reliant upon my chair and medical equipment, and that’s unsettling to think about. At any given time, those things can fail, and it might happen at a more inopportune time than what I described here. What if I were in downtown Portland  crossing the street and my chair decided to quit working? What if my BiPap breaks, and insurance won’t buy a new one? I’ve already had insurance deny my chair, and it was a scary time. I don’t mean to be Johnny Raincloud and bombard you with worst case scenarios, but these are concerns I have to consider as someone living with a disability. I want to encourage you not to take these things for granted. I know I do often times.

      • This topic was modified 1 year, 3 months ago by Ryan Berhar.
      • This topic was modified 1 year, 3 months ago by Marta Ribeiro.
    • #19246
      Halsey Blocher
      Participant

      Glad you were able to get them both working again! I’ve definitely had things break at really bad times. It can certainly make a person very grateful for when things work the way they should!

    • #19248
      Dennis Turner
      Participant

      Interestingly enough, this week I have had my wheelchair die twice. Once with a yet undiagnosed joystick error that resolved itself by turning the chair off and then back on, and the first when I tripped the main fuse from overworking the drive motors (they were both hot).

      In the case of the blown fuse, i was alone outside away from help except for my handy cellphone. I chose to “phone a friend” and told him what I thought was wrong and he was able to reset the breaker.

      Thank God for both friends who are able to drop everything and come over and for online troubleshooting manuals.

      Still, I don’t need ventilation help yet so that is a good thing for me because I would likely break it.

    • #19249
      Adnan Hafizovic
      Participant

      I always have a few wheelchairs, I have three wheelchairs in total. Sometimes mechanics can not come right away or have to wait for some part. Luckily the wheelchairs never messed me up to far from my house, but it’s still not a nice feeling when that happens. It happened me oce that my batteries were old and my friends told me to go to the concert and when we were returning the batteries were discharged, then they had to push me, and the problem was that my house was on the hill, and they managed to reach me half a hill, but then they did not have the strength to go on. Fortunately, some guys came in and helped us, but wherever we go,  we must take care that our cell phone battery is full.

    • #19250
      Crystal
      Participant

      Yeah nowadays I don’t even use my power wheelchair anymore. My manual one allows me to gain exercise while roaming round. But there was this one time, a LONG time ago, when my wheelchair completely died while I was rolling over a speed bump in the road in the middle of the night (lol don’t ask). Luckily, I have a strong older brother. Lol. And I really really hope my BiPap doesn’t stop working on me cuz according to my doctors, I can’t breathe without it when I sleep…and everyone in my family are hard sleepers.

      • #19282
        Ryan Berhar
        Member

        Yeah, I’ve tried to sleep without my BiPap before, and my lungs end up full of junk.

    • #19267
      Kelly Miller
      Participant

      Thank goodness Ryan, you were already at home when everything happened, altho I’m guessing having to stay in bed longer was a pain – maybe in more ways than one :-). I’ve run out of power before from dead batteries and had to be pushed all the way back to the car thru the grass at a festival. It wasn’t pleasant for sure on the person pushing! I don’t have breathing equipment either yet, but I imagine that would be a very scary situation.

      I just moved to a whole new state, and I have no idea where I’m going to get my chair serviced. We went from a huge metropolitan area to a slightly larger than small beach town. The nearest big city is 45 mins. to an hour away. I know for some of you that’s no big deal because you’ve always lived in rural areas, but I’m a big city girl. I’m going to have to figure out the best plan of where to go now, before I have that emergency.

    • #19269
      Dennis Turner
      Participant

      Do any of you have good turn around when something does go really south and you can’t use your chair?  Mine died at Thanksgiving and the substitute I was given was a childs. I am 245 lbs so that wasn’t good. I was told that repair would be done in 4 – 6 weeks.

      I got it back for Christmas. By that time my back ached and my knees would no longer straighten. Thank God for PT.

      • #19283
        Ryan Berhar
        Member

        For me, it’s not that simple. My chair is so incredibly fine tuned, that I can’t just hop in some replacement chair. If it breaks, we just fix it.

      • #19285
        Halsey Blocher
        Participant

        I have a chair that we bought online that we can move my seating system to, and I kept my old chair which is an extremely similar model. Fortunately, it’s rare that my chair repairs take long enough to need to use one.

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