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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 0 replies, 1 voice, and was last updated 2 years ago by Kevin Schaefer.

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    • #13802
      Kevin Schaefer
      Keymaster

      All of us have dealt with malfunctions with our wheelchairs, hoyer lifts, BiPAP machines and other devices we use on a daily basis. These are tools we depend on in order to live our lives, and it’s a pain when any one of them malfunctions.

      For me, my JACO robotic arm is currently under repair. As I’ve written about numerous times in the past, this device has made me so much more independent in the last few years. With it I’m able to feed myself, drink, pick up objects, adjust my glasses, press buttons and do so many other things without having to rely on other people. That said, it sucks when I’m without it.

      I do have a loaner now that works great, and I have no problem using it until mine gets fixed. However, I did have to go a week without one at all. The company wanted to try several things remotely before having to send mine back to headquarters. I was ok with this, as it does cost me money to send the arm back to headquarters and get the loaner sent to me. We tried different things with a technician over the phone, but nothing we did worked. I’m just glad that the company can look at it directly now and figure out the problem.

      All of last week though I had to rely totally on other people for eating, drinking, picking things up, etc. I’m fortunate to have a great support system of family and friends, but nonetheless I hate depending on people for things like that. At a wedding my parents and I went to on Saturday night, my Mom had to feed me at the reception. All of us here can relate, and we make do with what we have and adapt to our circumstances.

      The important thing is to have a backup plan when things like this happen. For me, this meant carefully planning out my eating schedule while my arm was out of commission. I had gotten quite used to being able to eat by myself, but in this case I had to plan around my parents, friends and caregiver’s schedules. Again, I really have great friends who helped me out in the last week. Friends who I went to dinner with last Sunday sat next to me and helped me throughout the meal, and didn’t make a big deal out of it either. Then my friend Jacob was able to work remotely this last week. He came over a few days ago and worked at my house, and was there to help me with things like lunch and getting set up for work. Weeks like this would have been a lot harder if I didn’t have great friends and family.

      What about you all? What do you do in situations like this? Do you have any stories that are similar to the one here?

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