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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.’”


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      Alyssa Silva
      Keymaster

      I may not know who you are or what you’re all about, but if I were to guess I’d say you’ve had some awkward encounter with a child out in public.

      Whether it was incessant staring, a comment made, or pointed fingers in your direction, children have an interesting way of expressing themselves when it comes to a person with a disability.

      In my latest column, I tackle this subject and how I have learned to properly, and positively, respond to a child’s curiosity. It took some trial and error before I figured out an adequate response that would satisfy a child’s logic. Because I think “I have a degenerative neuromuscular disease that is progressively weakening my muscles,” would fly right over their heads. 🙂

      In all seriousness, though, it wasn’t until a little girl called me ugly and her parents didn’t correct her behavior (you can read about it in my column) that I realized how important it was to communicate with children about disability and acceptance. I’m not sure why parents are so quick to protect a child from asking questions about disabilities.

      Can you relate? How do you tell a child about your disability?

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