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    Planes, Trains, & Accessible Travel With SMA

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    Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back.

    I have always flown with Leah by myself, just the two of us. Call me crazy; it’s OK, I am. There are some things we have learned that have made it so much easier for us.

  • This topic contains 4 replies, has 3 voices, and was last updated by  Grace Frank 1 week, 5 days ago.

    • 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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