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    Planes, Trains, & Accessible Travel With SMA

    Talk to your doctor to determine if you or your child is fit to travel.

    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  Halsey Blocher 1 month, 3 weeks ago.

    • Author
      Posts
    • #19576
       Ryan Berhar 
      Keymaster

      Hey everyone, here’s Michael’s newest column. It differs from the typical nature of his column, as this is less of an update on Ella’s life, and more of a flashback to what her diagnosis was like. What stood out to me was the nerve conduction test Ella had to do. I’ve never heard of this being used to help diagnose SMA before, and it’s not only sad that she had to endure it, but it’s also difficult to watch your child suffer like that. With my own diagnosis, my doctor could apparently tell I had SMA simply by the way I threw a ball. Much less invasive haha. Every SMA diagnosis is shocking and brutal for the family, and this was no exception. If you happen to be going through this now, know that you’re not alone. There are groups like this full of people who have been there. What’d you take away from this column? Do you have any questions?

      Our Commitment to Taking Care of Ella Has Never Wavered

    • #19578
       Dennis Turner 
      Participant

      Ryan, I was also diagnosed using electrical transmission.  In fact I have been tested this way 4 times, the last time my Neurologist said wait a minute, I have to have all the student interns see this! So she left me laying naked on the table with needles and wires sticking out to get them. I was early 20’s.

      When further doubts were raised regarding my diagnosis a genetic breakdown from a second muscle biopsy confirmed the original diagnosis.

    • #19579
       Halsey Blocher 
      Participant

      I’m surprised they did this test on someone so young. Most doctors stopped using this method a few years before I was born. Glad to see Ella is excited for her new bathroom!

    • #19580
       Ryan Berhar 
      Keymaster

      It just seems entirely unnecessary. There are other ways to test. I’m never letting them do this to me lol

      • #19593
         Halsey Blocher 
        Participant

        Most doctors just skip straight to the blood test. I’m so grateful no one ever did this test on me.

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