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

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    • #24973
      Alyssa Silva
      Keymaster

      Have you celebrated your birthday in quarantine? I’m turning the big 3-0 this month, and while I don’t feel like doing much celebrating these days, I still want to do something.

      My birthday always happens to be like that first COLD day of fall in Rhode Island. But doing things outdoors are basically my only option. Should I invite a couple of friends over to my backyard anyway? Tell them BYOB— bring your own blanket? Is there something innovative you’ve done and could suggest?

      Last year, I jokingly threw a big “not yet 30” birthday, and I’m so glad I did because at least I got one big birthday celebration. Who would have thought back then we’d end up here?

    • #25008
      DeAnn R
      Keymaster

      For my 30th I had a big bash.  Big birthdays when you have SMA are significant and worthy of celebration. I’m glad you had the opportunity to celebrate last year, but stinks you can’t celebrate this milestone the way you want.  Will your projector come in time? Maybe you could do something with that. Can you do a bonfire if it’s chilly? I still like your deck heater idea.

    • #25013
      Lisa
      Participant

      For my quarantined birthday, i lit some candles, prepped a lovely meal and played a birthday playlist of songs i have liked and listened to since my childhood- it was v v different- but extremely special

    • #25023
      Alyssa Silva
      Keymaster

      Yes DeAnn. The projector is here! I probably will have my dad set that up in time for birthday festivities. I’m definitely okay with doing something low key. It doesn’t have to be a rage to be meaningful haha.

      I’ve had a couple of ideas since posting this. 1) I’m going to do an adult cake smash photoshoot! It’s kind of just an excuse to be silly, but my cousin is a photographer and it’s a great way to have some fun social distancing style. Because I can’t smash the cake myself, I’ve recruited my niece and nephew (1 and 3 years old) to smash it in my face!

      2) I’m really struggling this season because of how much I love it and how little I’m able to do in quarantine. I spoke with my parents and they said I can turn our backyard into a pumpkin patch. So I’ll send one of my PCAs to Walmart to buy a TON of pumpkins and hay bails and cute lawn fall decor to dress up the yard. A birthday present to myself haha.

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