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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 year, 1 month ago by Crystal.

  • Author
    Posts
    • #20027
      Crystal
      Participant

      My mom sent me a link to a news article from our hometown about a 19 month old boy who is being denied ZolgenSMA by their insurance. I’ll link it here: https://www.14news.com/2019/07/29/insurance-denies-child-million-drug/
      It makes me so freaking mad and sad. Like I’ve pretty much accepted the fact that I will not be able to receive ZolgenSMA or Spinraza and I’m okay with that…mostly. But whenever I see little kids like Jackson getting denied treatment, it makes me wanna punch a wall – not that it’ll do anything to the wall. When I can’t punch the wall, I wanna cry.
      I wanna help him so bad. But I don’t know how. I mean, they set up a GoFundMe account but I can’t afford that. I wanna reach out to them and connect since they live in the same city as me…
      I kinda wanna start like some kind of bake sale or something like the ice bucket challenge for ALS but I don’t know what or how.
      Any advice, tips, or ideas?

    • #20048
      DeAnn R
      Keymaster

      Hey Crystal, I know it can be super frustrating seeing the need out there and not being able to do much about it. Especially now with treatments available. I myself can’t help financially, but I can encourage people to keep fighting. Meanwhile I try to inspire others to live their best lives despite adversity. It sounds like you’ve been doing that.

      Forgive me if you mentioned it before, why can’t you get Spinraza? Just curious if it’s a personal choice or if there’s roadblocks in the way.

    • #20049
      Kevin Schaefer
      Keymaster

      Hey Crystal, I actually saw on Facebook that this kid did end up getting approved. Took a few tries, but his Mom posted about it yesterday.

    • #20077
      Halsey Blocher
      Participant

      Think it’s great that you want to help Crystal! Even if he has been approved now, you could still reach out to the family. Sometimes being a role model for families with young children with SMA is one of the biggest things you can do! And honestly, everyone needs to know that there are people thinking about them!

    • #20096
      Crystal
      Participant

      Thank you guys! Yes, thankfully, he has been approved! I messaged his parents on FB and told them a little bit about my story with SMA and offered to answer any questions they have that only other SMA patients would be able to answer. His mom replied last night. She was very thankful I reached out and now so am I.
      I don’t qualify for Spinraza or Zolgensma. I’m not exactly sure why, but I think it has something to do with the surgery I had for my spine and something to do with my lungs as well.

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