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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”

This topic has 2 replies, 2 voices, and was last updated 10 months ago by Ryan Berhar.

  • 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!

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