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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, 2 voices, and was last updated 2 years, 4 months ago by Kevin Schaefer.

  • Author
    • #12282
      DeAnn R

      In the latest episode of  Dose of DeAnn: A Glimpse Into My Life With SMA, I talk about the process of acquiring a service dog and how Roy and I met. While Roy is my second service dog, I’ve had him for years and I talked about how we clicked right away.

      Believe it or not, a feature on Dateline years ago is what initially made me want to start this whole process. They did a story on a woman with a service dog, and I knew then that I wanted one for myself.

      The organization I use is called Canine Companions (http://www.cci.org/), and in this video I talk about the application process and how I got matched with my dogs. You want to make sure you get paired with a dog that you have chemistry with and that they will perform the tasks that you need them to do.

      Lastly, I show you all how I feed Roy daily, and talk about how important it is to communicate with your service dog and to do things for them. It’s a unique relationship for sure, and you need to make sure that you’re ready for the responsibility of handling a service dog before starting the application process.

      Check out the SMA News Today YouTube channel, where you can find all episodes of Dose of DeAnn: A Glimpse into my Life with SMA. You can also connect with DeAnn directly, right here on the forums page.

      Do you have a service dog? How does it help you?

    • #12313
      Kevin Schaefer

      Great video DeAnn! I went through Canine Assistants, but I’ve had my service dog Pandy (short for Pandora) since the summer of 2010. I actually wasn’t the one who initiated the process or the idea to acquire one. My parents wanted me to have one for college, and I was halfway through high school at the time.

      I was reluctant at first about it, mainly because I didn’t want any more attention than I already received. I knew people would “ooh” and “ah” over mine, which they did and still do. It took some getting used to, but eventually I did have a sense of gratitude about it all.

      Today, Pandy is more of a family dog. I work from home, so I don’t have as much for her to do. Plus I have my JACO robotic arm, and that helps me tremendously with my independence.

      For those who are considering acquiring a service dog, I can tell you that having one can bring a lot of joy and it can help you gain more independence. Just be sure that you’re ready to handle all of the responsibilities that come with it. DeAnn does a great job explaining the process and what it’s like to have a service dog on a day-to-day basis.

      • #12340
        DeAnn R

        Service Dogs certainly aren’t for everyone.  It does take a lot of work to keep up on their training.  Each program has its own training methods too, so it’s important to find what works for you.

        As far as the attention I’ve found it takes the focus away from me onto the dog which is fine by me.  It’s kind of funny, people say hi to Roy before they even acknowledge I’m there.

        Do you have to recertify Pandy ever?  Every few years I do just so the organization knows I’m keeping up with everything.

        • #12342
          Kevin Schaefer

          Oh people definitely run up to Pandy first and then say hi to me after, lol.

          And not that I know of. I think my Mom keeps in touch with the manager of Canine Assistants, and they’re always available if you have any questions or concerns. But they don’t do any kind of regular certification or anything, as far as I know.

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