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.
In the latest episode of Dose of DeAnn: A Glimpse Into My Life With SMA, DeAnn addresses the topic of genetic testing for SMA in infants. This video starts with a new installment of the “Alexa vs. Roy” segment, in which the challenge is to help DeAnn make a phone call. While Roy is able to pick DeAnn’s phone off the ground and bring it to her, her Echo Show allows her to make a voice-activated call.
During a phone conversation with her mother, DeAnn brings up the subject of newborn screenings, and explains this concept in more detail in the second half of the video. Newborn screenings refers to when a newborn is genetically tested for various diseases. In DeAnn’s home-state of Minnesota, SMA recently became one of the diseases that infants there are tested for. This is especially important now, as newborns who test positive for SMA can start receiving treatments before symptoms even appear.
Check out the SMA News TodayYouTube 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 in the forums.
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