Log In or Register to Join The Conversation!

Sponsored Post

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 1 month, 2 weeks ago by Alyssa Silva.

  • Author
    Posts
    • #24445
      Alyssa Silva
      Keymaster

      Ever traveled overseas before?

      As many of us know, traveling when you’re in a wheelchair can be equally rewarding as it is frustrating. I’ve been there many a time, but I would do it all over again for the experience.

      Zoe Watson shared her experiences with us for 31 days of SMA. She currently resides in Australia and has traveled to many countries over the years. After reading her words, I have a serious case of wanderlust.

      Have you traveled internationally before? What was it like? I’ve been to Portugal a few times and dealt with inaccessibility issues and other random things. One time I accidentally blew out my BiPAP machine even with the proper electrical converters. That was not fun. In the end, the trip was still SO worth it.

    • #24463
      Patrick Lenihan
      Participant

      I have traveled to Mexico, Canada, England, The Netherlands and France. Europe had less architectural accessibility than we had back when I went 22 years ago, but the peoples’ attitudes toward disabled people were much more enlightened than what I experienced here. Whenever I encountered a barrier people offered to help before I had a chance to ask.  Nobody made me feel like a burden for needing help. I loved it over there.

      When you went to Portugal, did you ever go to the Azores? My mother’s family was from Sao Miguel. I hope to one day go there.

    • #24465
      Alyssa Silva
      Keymaster

      Wow I’m surprised that you’re saying this. Everyone in Portugal gawked at me to the point where I was mildly annoyed. Good to know you had different experiences in other countries!

      My father’s family is from Sao Miguel as well, but I’ve never been to the Azores. My mother is from the central Portugal area, so we would stay there and then head to a small beach town where my grandparents had a condo.

Viewing 2 reply threads
  • You must be logged in to reply to this topic.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account

Copyright © 2017-2020 All rights reserved.