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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 4 replies, 4 voices, and was last updated 1 week ago by Alyssa Silva.

  • Author
    Posts
    • #24814
      DeAnn R
      Keymaster

      Somehow the mini van fit not only myself but my Hoyer, shower chair, bed roll, snacks and a weeks worth of clothing along with my mom, a driver and her puppy in training.  We don’t travel light. I’m not quite sure how we’ll fit in an extra dog on the way back, I’m sure we’ll figure it out somehow.  The most daunting part of the trip is now behind us. It took about 16 hours to get from Minnesota to Ohio, but we’re here!

      Since I received my first service dog in 2004 Canine Companions has been talking about building new regional training center. Finally it’s come to fruition. Instead of staying in a hotel for the duration of training we now stay on campus. I’m excited to be a part of the inaugural class.  The new facility is AMAZING! Everything has been thought out from roll in showers to low door buttons.

      Because of the current health crisis the normal two week training has been cut down to a week. Fine by me, yet there’s a lot to pack into that time. Today myself and 5 other teams got partnered with our dogs. My match is a handsome fellow named Horton. I’ll tell you more about him soon.

      Have you thought about seeking a service dog? Do you have questions regarding the process? Every program is different, but I can share my experience.

    • #24815
      Kevin Schaefer
      Keymaster

      Glad it’s going well! Exhausting I’m sure but well worth it. Looking forward to hearing more about you and Horton!

    • #24832
      Jim Schneider
      Participant

      What did you have to do to qualify?  Do you have to live in a certain area for them to provide a dog.  How long is the waiting list time?  Hope everything goes great for you in the training.

       

      Good luck, Jim

    • #24833
      DeAnn R
      Keymaster

      Thank you guys! It’s going well, I’ll post an update soon. To answer your questions Jim, I’m going through Canine Companions for Independence and it is a lengthy process starting with an application. They have regional centers around the country, so where you go depends on where you live. After the initial application there’s a more extensive application, need for doctors letter stating disability and need as well as an in person interview. Wait times vary, but I think 2 1/2 years is average. My initial wait was 5 years. It was long because they had a lot of retiring dogs at that time. Since I’ve had a service dog through them they bumped me up on the list this time, so I waited about 9 months from turning in the application. There’s no charge for the dog, however we’re responsible for all the costs after they’re in our care. We also are responsible for any travel expenses to attend training. Most if not all centers have housing available. Hope that answers some of your questions. Let me know if you have more.

    • #24835
      Alyssa Silva
      Keymaster

      Hey Jim. I had a very similar experience to DeAnn’s except I went to Canine Assistants in Alpharetta, GA. Not sure where you’re located, but they only have that one location and expect you to cover travel expenses. Just thought I’d share my input as well!

      Can’t wait for updates on Horton, DeAnn!

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