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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.

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  • This topic contains 2 replies, has 2 voices, and was last updated by  Ryan Berhar 1 week ago.

    • Author
    • #20915
       Ryan Berhar 

      Hey everyone, here’s Helen’s newest column. It’s a difficult time for her, as it marks the 22 year anniversary of her son’s death. Being put on the wrong machine contributed to his downfall. This is a good reminder that when it comes to SMA, doctors often don’t know what to do. In my experience, it’s better to consult members of the community who have been there before. What questions or takeaways do you have from this?

      ‘Tis the Season: Memories of a Fateful Fall Day

    • #20936
       DeAnn R 

      This article makes me think how far we’ve come over the recent decades. My younger brother passed away December 18th, 34 years ago when he was 4. Funny how those dates stick. Back then the respiratory support was very minimal. He too passed from respiratory failure. Looking back things could have been done differently, but we didn’t know. Even now though, you have to be your own advocate. My last hospital stay was traumatic because a routine surgery landed me on a ventilator. When they tried to extubate they didn’t follow protocol and it failed the first attempt. Thankfully I was transferred to a more knowledgeable hospital, otherwise I might not be here today. By sharing our stories, it may help the next generation. Thank you Helen for sharing. Hugs to you and your family!

      • #20949
         Ryan Berhar 

        Did your brother have SMA?

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