SMA News Forums Forums Our Community Parents​ ​and​ ​Caregivers​ Columnist Writes About Tough Memories

  • deann-r

    October 13, 2019 at 9:50 am

    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!

    • ryan-berhar

      October 14, 2019 at 4:25 pm

      Did your brother have SMA?

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