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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 4 replies, 3 voices, and was last updated 4 months ago by Grace Frank.

    • Author
      Posts
      • #19866
        DeAnn R
        Keymaster

        Since the FDA approval of Zolgensma anticipation is high to see if families can access it. Here is a fascinating article chronicling a families success story. I hope stories like this become the norm.

      • #19886
        DeAnn R
        Keymaster

        Here’s part 2 of this story. Maybe more stories like this will prompt infant screening.

      • #19968
        Krystal
        Participant

        My daughter dosed with commercial Zolgensma earlier this week. The process was simple for us, but I think it was due to the road that was paved from other families that fought hard for coverage.

        • #19978
          DeAnn R
          Keymaster

          Congratulations Krystal! I’m so glad to hear the process went smoothly. It’s so exciting knowing families are able to access this revolutionary treatment. Please keep us posted on her progress. Hugs!

      • #20119
        Grace Frank
        Participant

        Very happy for you, too, Krystal. Hope all goes well for your daughter!

         

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