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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 2 replies, 2 voices, and was last updated 1 month, 3 weeks ago by Ryan Berhar.

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      • #20915
        Ryan Berhar
        Participant

        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
        Keymaster

        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
          Participant

          Did your brother have SMA?

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