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.
As Serei Panh points out in their contribution to the 31 Days of SMA, sometimes living life takes a group effort. Besides making fond memories they can help through difficult times as well. Do you have a group of friends that are along for the ride? What adventures have you had with them? Read Serei’s story here.
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FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:
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